I just received my supply box of IV goodies for Rocephin. Nurse from Synergy Home Health Care to come tomorrow. I was hoping for a portable pump but I got a pole.
I know there's a lot of big brave Rocephin buddies out there. Someone come hold my hand and tell me it's going to be all right.
Wimpy Webby
[ 18. April 2007, 02:37 PM: Message edited by: Cobweb ]
Posted by 5dana8 (Member # 7935) on :
hi Cobwebb
I did a very short course of IV rocephin in 94 but did do IV for 6 months 3 years ago. The herx's where hard so whine away. But I was very Glad I did it. It did help alot!!
Hang in there Blessings Dana
ps: Post this in medical-you"ll get alot more responses
[ 05. March 2007, 08:27 PM: Message edited by: 5dana8 ]
Posted by Ganjagal (Member # 11095) on :
its gonna be alright!
I didn't get a pump either, but it only took about 20 mins to run, so relax!
Posted by Michelle M (Member # 7200) on :
Psshhaw!!
I remember being exactly where you are! Skeert silly!
Imagine how relieved I was when they just started, for God's sake.
Turned out to NOT be a big deal at all.
After perfect placement of the first PICC line, as we are all chatting and laughing, the nurse inexplicably PULLED THE WHOLE THING OUT!!
I could not help but continue laughing hysterically! They got a new line in easily.
If you've ever given blood, it's not unlike that.
I'd taken enough of a beating on orals that IV wasn't very hard on me, for some reason. I'm hoping you do well. I know it's going to aid greatly in improving brain/cognitive skills.
Keep us posted!
Michelle
Posted by just don (Member # 1129) on :
Its a piece of cake. Alot like a root beer float then,never fear were always here!!!!!!!
Posted by trueblue (Member # 7348) on :
Oh, I'm so excited for you Cobby! Yup, it's scary at first. You become a pro in no time. Really!
It'll be alright! I'll hold your hand. You can totally do this, piece of cake!
My first treatment was IV Rocephin. Imagine being diagnosed and the first thing they do is come put a picc line in. I was so brave and watched the whole thing in wonder.
As soon as it was in... I burst into tears and the nurse was nice enough to hug me and tell me it'll be alright. I hope you get the same nurse!
You've already been on some ABX, I think you'll be able to handle the Rocephin, fine. In the beginning... I would lay on the couch and watch the twitching show while I was infusing. Also, and very good fun, is waiting to see what I'd fling while preparing dinner while it was running.
What time are they coming tomorrow? We're here and are all holding your hand, k?
Oh, yeah, for me Rocephin clears my head really fast. I've had it more than once. I'd do it again in a heartbeat if someone would let me. So, do a dose for me and clear my brain while you're at it too! Posted by bejoy (Member # 11129) on :
Haven't been there, but waah away!
Sounds like its going to be just fine, though. You're going to feel so much better in a while, pretty soon everybody will be wanting some. Sign me up.
Let us know how it goes.
bejoy
Posted by Cobweb (Member # 10053) on :
Thanks all what has me slightly freaked are the Anaphylactic Reaction Kit and two Epipens included in the box.
Michele, I like the Psshhaw!!
Don-Root Beer Float-YES-Yum-but NOT via IV.
Dana- Real Lymenetters do General Support, too.
and
Ganjagal- I thought about relaxing with a video from the library-but my anxiety got the better of me because I put the DVD back on the rack thinking-what if I'm not around to return it!
Bless you, Carol
Posted by Lymetoo (Member # 743) on :
I remember the first time I had to give myself a shot. I thought I was going to pass out from fright!!
Bet my pulse and blood pressure was way up there!!
Now I give myself shots all the time.
You can do it!! Posted by Cobweb (Member # 10053) on :
Hey Bejoy- I was hoping you would show up. I don't feel the least bit like cleaning up.
In fact I have this fantasy that the nurse will report back to her supervisor that I need more than just nursing services-like maybe housekeeping,too.
Which gives me an idea-I think when I get well I'm going to start an agency that does just that-housekeeping for Lyme patients only-maybe Oprah's Angel Network will fund it.
I'll have fun posting tomorrow after my big adventure.
Carol
Posted by Cobweb (Member # 10053) on :
Yeah Lymetoo My insurance will only cover one month of IV, so this will be a short stint unless I win the lottery. Otherwise I'll be moving on to the shots too. Double WAAAH. Always good to hear from the pro's. Thanks, Carol
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Michelle M: I know it's going to aid greatly in improving brain/cognitive skills.
Heh, she'll be spouting poetry left and right.
Carol
Posted by Cobweb (Member # 10053) on :
"Heh, she'll be spouting poetry left and right."
Both day and night!
Posted by bettyg (Member # 6147) on :
carol, my friend, sorry to hear about the fear of the unknown IV. i've never been the route so can not give any advise.
but my friend, i give you my support 100$. yes, maybe you'll have time to write your poetry book, and i'll be no. 1 in line to buy it.
best wishes, and may god provide you with an unevennntable event tomorrow. i'm so tired will be logging off.
had to get up, bed was totally drentched with sweat again, so air drying flannet sheet and turned up heat really high to get it done.
i've been in bed majority of day. Posted by Cobweb (Member # 10053) on :
Trueblue-somehow you snuck past me last night-did you post in invisible ink? Waiting for the call-but coordinator said they infuse Tues-Fri. The anaphylactic Shock Stock expires 03/08/07-what a relief to know YOU didn't expire.
And Bejoy-I take back what I said-with all this nervous energy I think I will do a little straigtening up-at least I'll pick up the month old pile of newspapers in the middle of the floor. Besides it's getting too high for me to step over .
Now Betty -if you turn up the heat to dry the sheets-aren't you going to sweat even more? From one lyme brain to another-I think maybe you could use some rocephin,too.
Thanks gang, Love, Carol
Posted by stymielymie (Member # 10044) on :
walter, its really overwhelming at first but is it very easy.
if don can do it anybody can. you don't graduated to the pump till the third time.
you don't really want the pump. iv pole is much better, 15 minutes and your done.
just follow the order of the rinses the nurse gives you.
always alcohol off the rubber injection site. small bubble are not a big concern ,you need a bubble 30ml to kill you. always use the saline and heperin to keep the line open. if it cloggs, don't worry, the nurse has a drug that will unclogg the tubing.
not necessary to completely drain the line either,stop at the little bubble at the top.
play the raven's fight song and enjoy docdave Posted by Cobweb (Member # 10053) on :
Her name is Karen. She's coming about 2:30 this afternoon. I think I'll make my last meal a Quiznos Sub.
Besides that I had this bright idea of doing a virtual posting.
You know-something like"And now Karen puts on her gloves,oops, she just had to brush the cat off her lap and now needs to change them. Carol is sitting next to her talking to herself-breathe, just breathe, and trying not to faint.
Karen's cell phone rings which she instinctually answers and then has to change her gloves again after apologizing for the interruption. Karen starts to open the IV goodie bags talking way too fast for Carol to understand, so Carol asks her to slow down while she writes the instructions in large print.
Karen sneezes into her gloves and has to change them again. Carol is having an out of body experience. This isn't real. What is she doing here?
The cold swipe of the alcohol rub on her arm brings Carol back to reality. She quickly turns her head away from the site and starts thinking about cows and green meadows and ICE CREAM.She flinches when she imagines a bull running after her banana split which causes Karen to lose her grip and the needle comes out.
Karen looks at her watch and then back at Carol with a sly smile. She's going to be late for her date. Karen has to take off her gloves for a new pair and a new sterile needle kit. She is not happy-and neither is Carol.Carol smiles back at her with a toothy grin.
But wait-there are no more gloves, so Karen picks up the IV pole and whacks Carol over the head with it, knocking her out-so she'll never know Karen used her bare hands with the fake nails harboring a ton of bacteria to ram the needle into Carol's illusive vein."
Then the alarm clock goes off-it's only 2:15-I've still got a chance to run.
Wimpy Webby
Posted by Cobweb (Member # 10053) on :
Hey Stymie-Walter got lost in the move-none of us can remember his user ID . Maybe it will come back if any of this Rocephin makes it to the brain.
Hey -you just reminded me I have a Raven's T shirt some dear friend sent me-think I'll wear it this afternoon to feel close.
Talk to you later-I have to go make out my last will and testimony. Carol
Posted by just don (Member # 1129) on :
Doc Dave, Do I detect a 'just don' dig in your response???
If that was meant as a observation as to my abilities,,,I confess...guilty as charged.
Here I thought I had my ineptness well covered up,,,guess it snucked out!!!
Cob web,
You are always on my mind,,,I look up in the corner of my room,,,there you are. I thought about sweeping you away,just couldnt bear the thought,,,you keep waving in the breeze.
I love your virtual story,,,sounded JUST like my life,,always going when I should be coming. Always here when I should be THERE!!
Now stop whining and TAKE your medicine!!! Isnt that how your mother told you to behave??? Make your mother proud, take your medicine like a trooper.(Besides whats all this poking the veins talk??? No pic line??? That doesnt hurt at all. just the blood draws to make sure your still kicking and screaming. They dont hurt either,just the sight of it hurts the worstest.
From the dimmest bulb in the package--just don--
Posted by Cobweb (Member # 10053) on :
JD-this protocol calls for a peripheral IV which the nurse puts in. It stays in for 4 days and then I get to yanck it out until the Nurse comes back in three days to put another one in.
LLMD says she's had no problems with blood clots with this method of delivery.
I've seen someone else post on this method when I zipped through search.
Head em up, Move em out, JD's got the beef.
Carol
ps- I have to confess I just got the bit about the cobweb. Please don't brush me away. And if it sways a little in the draft-just pretend I'm waving to you. Posted by Cobweb (Member # 10053) on :
Stymie-Just took a nice long warm shower-lots of lather. Now I'm dried off and dusted-wearing my Ravens T-shirt-and a pair of purple fluffy socks to go with it. I'm ready-bring it on !
Carol
It's not the IV I'm worried about-it's my reaction to the new med. Can I suck it back out if I start to have a reaction? Posted by hopeful123 (Member # 3244) on :
good luck!! never had to go there or wasn't going to be approved. whatever. think of how brave you'll feel after.
Posted by bejoy (Member # 11129) on :
Carol Cobweb, you keep me laughing, not at you but with you.
Lets see, depending on the timezone of groundhog burrow, you've just gotten a righteous dose of the good medicine, or you're just about to get some.
What a weird lot we can be...did you feel awful from your treatment? Hooray, good for you! Here's another thought for the day - I understand that keeping a positive attitude about the herx builds the immune system so you can herx even more.
If your Rocephin adventure works well, I'll still be laughing with you about the piles of newspapers as they grow. If you lose sight of your floor again for a while, then you'll still be in good company!
bejoy
Posted by stymielymie (Member # 10044) on :
My dearest carol, i grew up in baltimore. women in baltimore don't suck!!!lol you have to gently blow it out till it comes out in urine, not myine.
make sure the rocephin is yellow and not purple. watch out for nurses that blow on the injection site after putting the betadine on. thats a definite no no and throw her out the door.
what to scare the crap out of the nurse. after she puts the betadine on, tell her your allergic to iodine, your floor may turn a little yellow below her feet. she should ask you but they never do.
we had lots of spiders and webs in pa, they ate all the ticks. now in fl the cameleons eat all the spiders. different food chain.
the sharks also eat the people in the water down here too!!!!lol
i better get off or you won't be able to stop laughing for your papillion, (butterfly)
see you on timonium road later tonight, our secret, dave Posted by iceskater (Member # 8655) on :
The fear is the worse part of getting a picc line- the anticipation of it all. You will be fine. Take a deep breath and it will be alright. I had two picc lines in last year and four months of iv rocephin. I did fine with it. Wishing you the best and good luck.
Posted by stymielymie (Member # 10044) on :
iceskater, carol is not getting a picc line, why i dunno. she is getting butterflies put in every 3-4 days taped on and removed for several days then stuck again.
mrs web: why are they not doing a picc line, it is actully less invasive and less chance of infection than multiple butterflies.
my pravens t shirt was on this morning and when i took my sweatshirt off ,the luck of the irish it was on underneath, good sign, and not intentional.
if you pee purple that's ok, at least your a real ravens fan.
just for info: rocephin needs to be straw colored only. if it is darker than straw color then it is no good and they need to make you another. do not unfreeze them too early either.
i would put mine in warm water for 10 minutes then run. the rochepin needs to be room to body temperature. cold solution will shock the system and blood vessels. make sure its nice a defrosted, no microwaves please.
if you ask the nurse nicely, she can put some antifreeze in the iv solution to keep you warm in the cold winter. just kidding please don't do this!!!!!!!!!!
docdave go dolphins
Posted by Geneal (Member # 10375) on :
Dear Cobweb,
I do so love your lyrical way of writing and your thoughts on describing the nurse hitting you over the head.
I know you will be a brave little soldier!!!
Sending you some calming thoughts and prayers.
Geneal
Posted by Cobweb (Member # 10053) on :
Well-Karen was the nurse of my dreams-as in when is my alarm going to go off so I can wake up!
Before I forget-some advice from Nurse Karen-if you forget to take the Rocephin out of the fridge in time for it to be room temperature when you infuse-just SIT on the pouch for 10 minutes. Personally I would rather warm it under my armpit than under my rump.
The cat did jump on her lap-and she said-oh that's all right I rescue cats.I must say she didn't pet him, she just jiggled her knees until he fell off.
But then she said " we need more light"(remember I'm in a basement apartment and I'm Vitamin D deficient)so she got up and touched everything in her path as she pulled on the venetion cord, rearranged my plants and grabbed my curtains to tuck them into these rather dusty never been cleaned blinds.
Her first attempt at an IV, after assuring me that she had done this procedure many times, didn't go as planned.She did put on gloves at this point, but then bit off the tip of the index finger commenting on how impossible it was to find a vein through the gloves. Then she kept tapping my wrist area, and began breathing so rapidly I was afraid she was hyperventilating.
She stuck the needle in, as I turned my head and tried to think of cows and green meadows, but it hurt so much I glanced back-and that's when I started hyperventilating! It looked like the needle was going to poke back out of my skin like she was doing a running stitch!
I don't remember what she said specifically but it was something about hitting a valve. All I know is that the end of it was BENT when she pulled it out!
Saved by the bell. Her cell phone rang. And she answered it. From what I could tell it was a conversation with her teenage daughter , reassuring her that a sinus infection was not contagious. When she got off the phone she told me her daughter had the stomach flu that was going around with the vomiting and diarrhea.
I felt like I was looking at DOOM. Still my alarm clock did not go off.
to be continued...
Posted by bettyg (Member # 6147) on :
carol; i'm here late, but my support for you continues as wel as all the thoughts/prayers behind it hoping part 2 went better than part 1!
i sent newbie links to 20 people i missed not being on for 2 nights; thought i'd never get them all caught up to date.
i'll check on you sometime late today; spent the last 5 days in bed. Posted by Geneal (Member # 10375) on :
Dear Cobweb,
Thanks for the update. We should start calling you Super Cobweb as you can bend those needles of steel!!
I've had nurses fish that needle up my arm, then collapse my vein in an attempt to get blood. No fun at all.
I personally think you should go for the rump warming method. If it were me, you would definitely get better coverage.
I am so sorry that this is such a trial.
Just another big step down the yellow brick road to recovery.
Hope you are doing well this am.
You continue to make me laugh and smile with your postings. Wish I could be there to give you a hug.
Geneal
Posted by Cobweb (Member # 10053) on :
"Babies and cats" she said. "Babies and cats see ghosts" At least that's what Nurse Karen told me when I wondered why she kept glancing at the ceiling. Turns out she was checking my IV bag-see-she had jacked the IV pole up so high it almost touched the ceiling.
"gravity drip" she told me. I told her the bag was up so high I couldn't see it and my neck hurt everytime I tilted my head back to look. She said that was okay-she'd keep an eye on it. But then she got to talking so much she forgot and the bag ran out, and the tubing ran out.
She put my mind at ease by telling me a little bit of air wouldn't hurt me-and I remember DocDave saying the same thing. I'm still here, so yeah, a little bit of air in the line is okay.
When I told her my cat would sometimes stare at the ceiling like he could detect a mouse in the wall, she said "Ghosts-babies and cats see ghosts" And she nodded her head with great authority.
I was afraid she was going to suggest a seance. Instead she rubbed the end of her nose, like she had a booger tickling her. Then she reached over and disconnected the IV.
I'm doomed. I know I'm doomed. I wonder how many ghosts can live in one apartment at a time. Maybe we can split the rent.
Posted by Cobweb (Member # 10053) on :
[QUOTE]Originally posted by Geneal: Dear Cobweb, I personally think you should go for the rump warming method. If it were me, you would definitely get better coverage. Geneal [/QUOTE
I thank you for the chuckles,too. Carol
Posted by Cobweb (Member # 10053) on :
Stymie-LLMD says her patients have done better with peripheral IV's. A couple her patients have gotten blood clots with the PICC line.
It was my choice, but she discouraged me from getting the PICC line. Seems like in her experience there have been less complications-of course, I don't think she's met Nurse Karen.
Posted by bejoy (Member # 11129) on :
Yeeeeeeouzuh.
You must be the spider woman, and poor silly nurse Karen tried to put the line in where those cobwebs of steel come from. Now fess up.
Bit by one of those special little US gov't genetically engeneered arachnids, were you?
By day you are the humble and loveable cobweb.
By night, the spider woman, and your cat a feline superhero. Together you roam the planet via the web ridding the world of lies and injustice...
Posted by stymielymie (Member # 10044) on :
CAROL: DOES NURSE KAREN WEAR BLACK LEATHER NURSE OUTFIT.
Posted by stymielymie (Member # 10044) on :
CAROL: DOES NURSE KAREN WEAR BLACK LEATHER NURSE OUTFIT. i think i'm in love!!!!!!!!!
is she available, i'll come up to visit you next week, in the hopes of meeting THE NURSE KAREN.
the very sicko docdave Posted by Cobweb (Member # 10053) on :
Cave(y)-So you think I'm rambling, I suppose that's better than babbling. It's all true, no poetic license needed!
Although it was the IV insertion catheter tip that bent-whatever that is made out of. I don't know.
Anyway it's infusion time again. I did it solo this morning.
Bejoy-so that's how you spell yeeeeeeouzah-I thought there were only 5 e's. I'm looking to beat Cave(y) in scrabble some day.
Here's something we can all relate to-for the intake, Nurse Karen(BTW Stymie-she's coming back Monday)had to make a list of all the meds I take-I brought her the bin I keep them in- she ran out of room on the form. And there was a lot of room. Lymies are in a league of our own when it comes to the amount of meds we take.
She took my blood pressure at the end of her visit-I think it was higher than before her visit.
Carol
Posted by trueblue (Member # 7348) on :
quote:Originally posted by Cobweb: Anyway it's infusion time again. I did it solo this morning.
Carol
I knew you could do it! Good going, Cob!
Ha, and the nurse will have to learn to write smaller if she's gonna attend to lymies.
Go Carol!!!!!!!
Posted by Cobweb (Member # 10053) on :
"This trick comes from being a Mom and realizing you're not an octopus" stated Nurse Karen. With the IV line in one hand and the Saline syringe in the other-she pulled the cap off the syringe with her teeth.
I stood by speechless. By this time I felt like I was watching a circus act and wondered when I was going to get a box of Cracker Jacks.
She performed the same trick for her grand finale with the Heparin Lock Flush. I think I saw a piece of spinach stuck between her teeth.
Forgot to mention. To insure my comfort, but totally ignoring any attempts at providing a sterile field, Nurse Karen grabbed my lyme green pillow off the back of the couch as a cushion to lay my arm on while she stuck me.
She fluffed it up and folded it in half. When the first stick didn't work she turned my arm over and started the same rapid breathing and tap tap tapping on the underside of my arm. I think this is when she bit the end of her glove off to expose her index finger-which she seemed to be using as a divining rod to find a good vein.
With the successful insertion of the second IV catheter she removed the pillow . We could both see that a considerable amount of blood had soaked into it from the first stick.
"Do you have a bandaid?" I asked weakly. "Oh just use some peroxide, the stain will come right out" She told me as she brushed the pillow off and returned it to the back of my couch.
I think I'm going to leave the blood there, on my lyme green pillow, sort of looks like a Purple Heart.
Lyme Warrior reporting from front line, Carol
Posted by stymielymie (Member # 10044) on :
cobby: mointor yourself very carefully for too many toxins in your system.
2 weeks after i took my first rocephin,that's when neuro signs started.
i do believe this was from too many toxins in my system.
you may ask the doc to detox you after a week, maybe you won't get bad neuro syptoms like i did.
i still believe to this day it was from the bacteria toxins giving off too quickly into the blood stream.
maybe try a slow kill with pulsing.
docdave
Posted by Cobweb (Member # 10053) on :
WEll, I don't know what all the fuss was about, this IV business is a piece of root beer float.
I've been keeping the site nice and clean,too with the cuff of a sport sock ,as per Nurse K's instructions. She said I needed something to cover the tubing so it wouldn't get caught on anything.
I pointed out that there was a nice sterile roll of ace bandage in the IV box of supplies. "Yeah, but it's three miles long" she said, "and impossible to work with-have any sport socks?" "Do they have to be clean?" I asked.
I didn't want to tell her that I usually wear the same pair of socks for about a week depending on whether I have any doctor's appointments that might require me to take off my shoes.
Seems like it's easier to just buy a new six pack than do the laundry. I still wear Depends for the same reason. Disposable underwear is the next best thing to sliced ice cream cake.
I found a single mismatch and brought it back to her. "Got any scissors?" she asked. All I could think of were the kitchen sheers-the ones I use to cut open food packaging and trim my bangs.
I thought for sure she would at least wipe them off with an alcohol rub. Silly me. She just took the sock and chewed it in half with the scissors.
Then she slipped the cuff over the tubing-and said-"there you go! It's a little loose though, so if you get a chance-pick up a six pack in a smaller size"
"No problem" I told her. I know just where to get them cheap. Then she gave me the 24 hour emergency number in case I got concerned about anything. "But you'll be fine" she added,"see you Monday" Posted by Cobweb (Member # 10053) on :
Stymie- you just burst my bubble ! After two days with a killer headache I woke up this morning feeling like my old self , you know, in my previous lifetime before Lyme.
I've spent all day wondering if it's just a tease. I did buy several fresh lemons though to keep the mojo cleansing lemon water flowing.
I saw some detox foot pads to wear at night in an Avon catalog of all places. What do you think?
I have an appointment with my LLMD next week-she's keeping a close eye on how this goes for me.
And BTW Stymie-I think of you everytime I check the med bag to make sure it's the pale color of yourin without any stonz. I'll let you know if I find any.
Hangin in there, Webby
Posted by stymielymie (Member # 10044) on :
y'a know the nurses should have a scissor first. second , they also have mesh socks that cover the cath and tubing.
three: the headache was from the little stone you didn't see.
four: taking a shower is real fun with your hand out the curtain. i bought a rubber sock, but my picc was in for 3 months. plastic bags and rubber bands work good too!!!!
Giant brand bags work the best, since yo don't have publix up there.
you have to wear a green bag next week for st pats day.
so now you walk around the house with one sock on arm and one on foot.
can anyone please donate a pair of socks to carol please!!!!!!!!!!!!. will have to now call you carol the sockless lymie from baltimore.
i heard the orioles are look for anybody that can stand up to play this year.
go what's my team down here
kneeless docdave but i still can claim those kidney stones. taking any offers.
Posted by Geneal (Member # 10375) on :
Dear Cobweb,
I really enjoy reading your postings. Thank you for your sense of humor and your writing abilities.
As for the dirty, kitchen sheared through sock....it justhelps build a little more immunity.
Glad to know you are doing well and feeling better.
Hugs,
Geneal
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by stymielymie: four: taking a shower is real fun with your hand out the curtain.
Nurse K went into great detail about how to keep the line dry. Something about Saran Wrap and tape. I pretended to be paying attention, but I had already decided that one of the perks of having an IV line was not having to take a shower.
My balance isn't so good either , so trying to shower with one hand out the curtain doesn't appeal to me. I'm afraid I'll fall into Stinky's cage. He lives in the bathroom. When you sit down on the toilet he comes out of his "cave" and stares at you-eyeball to eyeball. The bathroom has an air vent, so when Stinky gets too stinky I just turn on the vent until I feel like cleaning his cage. Pretty clever for a lyme brain.
And now I have a good supply of gloves to wear when I clean his cage-because for sure Nurse K doesn't use them.
Anyway , my daughter gave me this shower curtain for Christmas. Looks like a great big mural of a lighthouse. I suppose I could cut the curtain to stick my arm out where the port hole is at the top of the lighthouse. But I don't want to risk hurting her feelings.
If I get too stinky myself I'll just move the TV into the bathroom and turn on the vent.
I've also decided it's too much of a risk to wash dishes ,too. I've noticed that twitch thing that Trueblue mentioned. I've been flinging dishwater around the kitchen. Not good. Nurse K warned me that if I get the tape wet I might unravel. And she should know.
Sooooo- I guess it's carry out on paper plates for the next month.TSK TSK Just trying to improve my coverage in case I forget to take the meds out of the fridge in time.
BTW-Yesterday was a good day. But today I found myself sitting on the couch trying to change channels with the cell phone! Doesn't work. I just hope I didn't run up too much of a bill with long distance calls.
Wobbly Webby
Posted by bettyg (Member # 6147) on :
carol, you are a R I O T !!! have to wear depends just to read your funny posts!
loved that stinky was in the bathroom and when it's too bad, you turn the vent on!! you go girl. time for my nap; went to bed 6 am; up 1120 am; where do my days go? so screwed up. Posted by Cobweb (Member # 10053) on :
This just might put you over the edge Cavee-my first set of supplies arrived in a box labled "This box of supplies is a CLEAN environment. Hands must(underlined) be washed before opening."
Today I got my second week of supplies-in a brown paper shopping bag ,stapled at the top, with my name written on it in magic marker.
So what should I do when Nurse K shows up on Monday-open the door and make the sign of a cross in front of me with my fingers?
The other thing that had me furrowing my brow-as in this doesn't even make sense to me-she had to do a blood draw-which she said she could do from the IV-fine with me. But she drew it right after she did the initial saline flush. Should be some interesting lab results.
I get to pull this thing myself on Saturday morning after the infusion. Any tips for that little maneuver?
Now I know the scoop I'll remind Nurse K she took a vow of sterility when she was hired for this job.
Wish I had a web cam...
Posted by Cobweb (Member # 10053) on :
Okay maybe she'll get the message if I spray her with lysol when she comes in.
Quick give me a lesson on being ASSERTIVE. She's calling Sunday before her visit Monday. Maybe do a little role play here:
(C) Hello?
(NK) Carol? This is Nurse K. You're still alive? Shucks I was planning to go on vacation this week.
(C) Yes, NK I'm still here inspite of the fact that your last visit was the most unprofessional IV insertion ever recorded in history.
(NK) But, but-you recorded it?
(C) Yes, and I have witnesses.
(NK) So I've got to clean up my act?
(C) In a big way , you idiot. Who do you think you're dealing with anyway?
(NK) But you looked so innocent and stupid and well, foggy I thought I could get away with it.
(C) BUSTED! Now next time you come I expect you to wear scrubs , a face mask, and gloves or I'll bite you. And bring a pair of those surgical footies to put over your shoes.
(NK) Will I get Lyme Disease if you bite me?
(C) No, but you might get rabies. It's been a long time since my last rabies shot.
(NK) Are you going to report me?
(C) Depends on how much you're willing to pay me not to. My medical bills are pretty high and I'm hoping to go on vaction,too-someday. I suggest you cash in your retirement fund.
(NK) How about I let you use my Time Share in Kissiminee in Sept.?
(C)-but that's Hurricane Season.
(NK) I know.
(C) This conversation is not going the way I planned. Then again, my life is not going the way I planned.
(NK)Mine either- I thought I'd be able to go on vacation this week, but NO, you survived.
(C) That's because God is in control- "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future"
(NK) You talk to God?
(C) Yes, and cleanliness is next to Godliness-so don't even THINK about stepping foot in my apartment unless you're sterile. Besides, Lymenet's got my back.
(NK)Alrighty then, see you tomorrow.
Posted by bettyg (Member # 6147) on :
carol, BRILLIANT job here! way to tell her off, etc.
Posted by stymielymie (Member # 10044) on :
caveeey, did i actual say all that. i must have been having a brain attack.
webby: don't take this wrong, or take it wrong. dressing change kits should be self contained sterile boxes 4"x 4" with drapes tape, sciscors, tegaderm, clear patch ,also sterile. sterile betadine, and alcohol wipes.
do not accept anything less, this is how its done and anything else is not standard medical, sterile procedure.
yeh, and all the big words caveey uses. but don't completely rely on her sense of sterility, i heard when she was a hygienist her nickname was bloody caveeey, (so girl)!!!!lol
andabout your tape coming undo, well your already way way past the point of being of becoming unravelled.
HEED CAVEEY'S WARNINGS ,we both know about sterilization techniques from dentistry. sterile technique, is playing with your life if not done to exacting measures. biting the tip of the rinse solution is not really appropriate, but mosy nurses do it anyway.
NEVER, NEVER, NEVER TAKE BLOOD FROM THE IV TUBE. THE BLOOD CAN CLOT AND DESTROY THE PICC LINE. JUST GET STUCK IN THE OTHER ARM, AND INSIST ON IT.
THE ORIFICE OF THE PICC ;INE IS HALF THE OPENING OF THE BLOOD NEEDLE, AND WILL CLOT.
OTHER THAN THAT, ELLO CAVEEY, ELLO COBBY, ELLO CAROL, ELLO WALTER WHEREVER YOU ARE.
DOCDAVE
Posted by Cobweb (Member # 10053) on :
Well, too late. I already pulled the line. I didn't find any special kit in my box of supplies.
I took some gauze from the IV starter kit to cover it. And I opened TWO alcohol prep wipes to clean it.
There was a loose roll of tape which I tore strips off to hold the gauze down.
Then I put my sock back on for added protection.
So far it's only bled through the gauze-not the sock.
But thanks for the advice.
Wonder where she'll stick me on Monday?
Carol
Posted by Cobweb (Member # 10053) on :
Round Two-this time she stuck it in the vein right where my wrist bends near my thumb in my right arm. Kind of aches when I type too much.
But ,Stymie, I hope this cheers you up some. She drew blood separately from the left arm.
Here's a totally unrelated problem-there's birds nesting in the vent over the stove at the trailer. I can hear them. If I take the vent off I can just tell they'll be flying around the kitchen with two crazy dogs chasing them.
Maybe I'll post in off topic on this one. But I think it needs to be cleared before any eggs are laid.If I turn the fan on I'm afraid I'll chop one of their heads off-eeeewwww.
Carol
Posted by Cobweb (Member # 10053) on :
Hey- I got a letter from the insurance company. They were pleased to inform me that I have been approved for 999 days of home infusion therapy.
Which I figure means one of two things:
1. they think I'm really sick or 2. they know Nurse K and don't think I'll live very long anyway!
Wordie Webby, Carol
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Cobweb:
999 days of home infusion therapy.
Hey- I got a letter from the insurance company. They were pleased to inform me that I have been approved for Which I figure means one of two things:
1. they think I'm really sick or 2. they know Nurse K and don't think I'll live very long anyway!
Wordie Webby, Carol
cute carol! almost 3 yrs! that's progress! bst wishes for a LONG life with us lymies! you can't leave us! Posted by Cobweb (Member # 10053) on :
Yeeeeeeouzah! I got that from Bejoy.
The line is full of little bubbles-looks like carbonation. Hiccup
Scuse me, Carol
Posted by just don (Member # 1129) on :
Hey Carol, You ARE making it,,,one day at a time,,,just like us,,,and YOU thought you couldnt do this,,,goes to SHOW ya!!!!
Your humor is refreshing,,,at least!! Sounds more like a rerun from my old life,,,except for the 999 day part. their is "ACTUALLY" an insurance company that would approve that long up front???
You are so lucky, think of all the others that arent!! Keep talking,,its music to my ears!!
Posted by lymemomtooo (Member # 5396) on :
Take the air bubbles out if possible. lmt
Posted by Geneal (Member # 10375) on :
Dear Carol,
How are you feeling? Are you herxing or just feeling better?
Maybe you could ask some of those ghosts to scare those birds away.......
I am glad you are doing well. Your humor and resiliance is fantastic!!!!
No bubbles allowed.....except IN the champagne!!!
Hugs,
Geneal
Posted by Cassie (Member # 2106) on :
Hi Carol,
Just read your story, you are hilarious have you every thought of writing a book?
Is nurse Karen related to Lucile Ball?
Hope everything goes well for you
Take care your friend Cassie Posted by Cobweb (Member # 10053) on :
Thanks all-I was getting tired of talking to myself!
Truth about how I'm feeling??????Well, quite honestly my thought just before posting was "is this really worth it?" YIKES It's trying to understand the ole "why is it good to feel bad? question. Read my lips-H-E-R-X.
Thank goodness I know the routine. It's not the "I'm gonna die, I just know I'm gonna die" feeling, which I have had on a couple of other meds.
It's really just the body aches, thick head, I wanna go to bed-wake me up when this is over feeling.
Now I must admit, in her defense, Nurse K pronounces spirochetes very well, even if I can't spell it very well. And she warned me-just as Stymie, or was that Docdave, did that the second and third week could get a bit discouraging.
One of the perks is that I'm an aging hippie, and shooting drugs gives me this perverse pleasure. Like it takes me back to the good old days when I was young and wearing moccasins and beads and feeling the LOVE.
I actually just sold an old VW van. It was to the point the only place we could get parts was at the junk yard. My kids gave it new life for a while when I let them paint it with flowers and peace symbols.
They thought it was cool to ride around town in the hippie van. One day my oldest, just got her license, hormonal, never drove a stick,16 year old , got real mad when I wouldn't give her the keys to my car. "Fine", she said ,"I'll take the van !"
She got as far as my neighbor's front lawn. It was a rather humbling experience for her. But teenagers need to be humbled from time to time.
And I need to go to bed-my body has turned to lead.
I have found out a little bubbly in the line really is fine-then again maybe that's why I'm feeling a bit like an airhead at the moment.
Night John Boy.
Posted by bejoy (Member # 11129) on :
"Why is it good to feel bad?", she says.
That's what I keep asking myself.
I just got to the point in my life where I'm learning to be gentle on myself and give myself a break, and its back to "no pain no gain."
Like I want to get out my old Jane Fonda workout video. "Feel the burn!"
Say it again... Yeeeeeeouzah! Make it hurt so good!"
Sleep tight. Sweet dreams all.
bejoy
Posted by bettyg (Member # 6147) on :
carol, had to read the latest of your escapades out there! yep, you haven't lost your humor ... good deal with us lymies here! Posted by Geneal (Member # 10375) on :
Dear Carol,
I was hoping that you were maybe waving that old herx truck on by.
Maybe you can shave your head and pass out flowers on the corner? Or just draw a smiley face on your IV bag....
I am a child of the 60's too. I begged my parents to get one of those vans or at least a VW bug (original one). I am so jealous!!!
NO such luck. They purchased a Pontiac Catalina. That is the car that I was allowed to drive.
It became rather embarassing in my later teenage years.
Hoping your herx starts letting up soon.
Hugs,
Geneal
Posted by stymielymie (Member # 10044) on :
hey man, go get a doobee and smoke it. it will make you feel better.\
shame you don't live at the old place .mj is cheap down there.
my dad had a head shop on the corner of falls and 39th? never smoked but good business.
the cops used to come in for supplies.
docdave Posted by Cobweb (Member # 10053) on :
Reminds me of a bumper sticker I saw the other day.
"What Would Scooby Do?"
Posted by Geneal (Member # 10375) on :
Don't be doin any doobies, even if they are prescribed by a MD.
Did you hear about the lady with brain cancer in Ca?
They have decided to prosecute her for medicinal use of marijuana.
Too much government!!!!!
I don't condone the use of illegal drugs, but if you are in pain and dying, then who cares?
Obviously your government does. They really want to protect us from ourselves......and others.......but not ticks!!!!
Hope you are having a "groovy" day.
Peace.
Geneal
Posted by Cobweb (Member # 10053) on :
I'm a genius!
The sock covering my IV, pure white, brand new to begin with, was getting a little grey-almost black. Thought that might be an indication I needed to take a shower soon. But how?
Then it hit me. Inspired by the Holy Crab. I could use the plastic sleeve covering the newspaper when it was delivered. Perfect length, size, even bright yellow-like crime scene tape-and the fact my lyme progressed to the point of needing IV is, in fact ,a crime.
Furthermore, I figured out I didn't have to cut out the lighthouse port hole on the shower curtain to stick my arm through if I held onto the curtain rod, not only was I able to keep my balance, but my arm was above the shower spray. TAAADAAAH.
Learning to use my left hand , thereby earning an honorary certificate in Ambitextriology was a real bonus.
Of course, sweat inside the makeshift plastic sleeve almost ruined the whole plan-but that just gave me a good excuse to make it quick. Next time maybe I'll put some holes into it so it can "breathe".
This Rocephin must be working- I'm getting smarter by the day!
Too bad I don't get the daily paper. Well Washed for now, Webby
Posted by just don (Member # 1129) on :
Hmmmm, you even smell puuuurty,,,from here!!
Posted by Cobweb (Member # 10053) on :
Gosh JD-I'm blushing-as I'm flushing-Heparin that is. thanks. Cobweb
Posted by Cobweb (Member # 10053) on :
I would only admit this on lymenet. I put dayglo cling-on snowflakes on my picture window. Big ones-about 4 inches in diameter. Why?
So the paramedics would be able to identify my apartment in case of an emergency. How's that for thinking ahead-as I gasp into the phone-"I've fallen-and I don't know which way is up"
I think it's especially clever since they glow in the dark,too.- Why aren't they called "nightglo" instead of dayglo.
Anyway- don't believe what they say about no two snowflakes are alike. I have ten of them and they are ALL identical. Posted by Lymetoo (Member # 743) on :
How come no one told me this thread was here, causing people to LAUGH?? I LOVE laughing at the expense of others! Just kidding!!
Yes, I agree. I hope you have a little talk with NK. Tell her that because your immune system is so compromised, you're really concerned about germs.
And...I didn't know you were an old hippie!! GROOVY indeed!! I grew up during that time, but I was a dismal excuse for a hippie.
Never wore the peace symbol, never smoked a joint, never streaked on a college campus, didn't even play a kazoo!
Gosh, the things I missed!!
I did, however, wear cut off ragged jean shorts and had VERY long straight hair during college. Had to LOOK like I fit in! Posted by Cobweb (Member # 10053) on :
When Nurse K asked me how I was feeling and I answered "I feel like I'm going to die, and I don't care." she said "Good, it means your treatment is working!"
She also told me I have "little squiggly" veins. Is that a real medical term-squiggly?" What does it mean? I looked it up in the Merck Manual but I couldn't find it. She told me it's because I don't excersize enough.
I asked her if there was a portable IV pole so I could go play tennis with Stymie. She told me that's why mine has wheels.
It's a heavy mother. It's even hard for me to drag to the kitchen for some more chocolate sauce on my ice cream (for Betty G) or another root beer float (for JD )or another ounce of Xango :lick (for Tutu)or stirfry tofu (for Bejoy).
I will say-all those trips to the kitchen have given me more "coverage" for a quick warmup of the Rocephin. Isn't that right Geneal?
This time she stuck me in the vein that pops out on the thumb side of your wrist, well, my wrist, at least. The infusion kept stopping whenever I moved my hand. Nurse K told me to get a popsicle stick to stabalize it. Now how am I going to keep the tape dry with a popsicle taped to my wrist?
She said next time she was going to bring a board. Oh no! Was I dreaming again? I immediately pictured a white pine 2x4 about 8 feet long to whack me over the head with because of my "little squiggly" veins.
And yes, Cavey, I did pull out my poetic license for the part about dragging my pole to the kitchen. I can't even stand up from my couch without rocking back and forth to gain momentum. Even then I need a two handed push off. Too much co-ordination necessary. It has to be timed just right for lift off or I just fall back onto the couch.
To Infusion and Beyond, Webby
Posted by Geneal (Member # 10375) on :
Dear Carol,
Trust me I could warm that bag of antibiotics lickety-split!!!!!!
You need to get one of those wheel chairs with the IV pole attached.
We could nickname you "Hot Wheels"!!!!
Seriously though, I am sorry you are not feeling well. Strange disease where the cure is worse than the illness!!!!
I have to tell myself that every time I feel like death warmed over.....it's working, it's working, .....I'm dying, I'm dying,.......Oh Wait...
The ketes are dying, the ketes are dying.......
I had a funny reminder yesterday that I still have a long way to go.
Trying to get LLMD's office to fax me a Rx for my husbands Igenex test (which I am sending out today).
Home phone line is same as fax line. Have to d/c the phone line, hook up the fax.
I had maybe 2 minutes to get this done (Something I have done hundreds of times).
Sat in front of that fax machine with one of those "deer caught in the headlights" expressions.
Couldn't for the life of me remember how to do it.
I knew that I knew how to do this. Tried to find the right place to stick the phone jack in.
Searched frantically all over that fax machine.
Just as the phone was ringing, it came to me.
I feel like a Lyme version of Dumb and Dumber, but I had to laugh.
Make sure you get to eat the popsicle so you have a fresh stick to tape to your hand!!!!
Hugs,
Geneal
Posted by Cobweb (Member # 10053) on :
"I'm dying, I'm dying,.......Oh Wait...
The ketes are dying, the ketes are dying......."
Good take on the situation ,Geneal. Thanks
Tomorrow's the first day of Spring, time for me to come out of my Groundhog Burrow-but I don't know where to go. Posted by bettyg (Member # 6147) on :
carol, just come here; we'll take you and your wonderful sense of humor just as you are!
what a witty post above; you included as many of us as you could in those kitchen treats; didn't you?
hope you get to feeling better soon!
my friend who just died 1 month ago would have been 100 tomorrow! we'd been playing dominos for 5-7 years; what a sweetheart she was! take care carol; WE LOVE YOU AS YOU ARE! Posted by sometimesdilly (Member # 9982) on :
hey cobby-
checking in after some long stretch. is see that that you are doing IV's and that it is good. skipped through the feeling bad parts of the story, because i'm determined that it have a happy ending.
hate to tell you, but you're no wooz. doing the iv thing. boldy. being funny.
if i were corrigible i'd be inspired.
as it is, i'm off to have another rum and coke and not take ANY MEDS, again, two weeks in a row.
love, the fallen DILLY
PS- BettyG- are you still scheduled for surgury???
Posted by bettyg (Member # 6147) on :
dilly,
yes, i go at 1 pm TODAY for my pre-surgery physical, EKG, chest xray, blood/urine tests.
monday, march 26, i'm admited at 1030 am; SURGERY AT NOON to replace my left hip!! wow, it's been a long 7 weeks since i got this originally scheduled, and had to cancel 3 weeks ago to a bad case of the FLU.
finally started doing my mandatory leg/hip exercises yesterday; couldn't before this..so much pain and could barely walk.
thanks for asking; i'll post a reminder on sunday 3-25; then i'm off for 7 plus days!!
LYME WITHDRAWL! i'm going to miss you all! Posted by Cobweb (Member # 10053) on :
Betty- I have marked my calendar again. I am greatly interested in hearing of your experience because I have a bad hip too.
Aren't we too young for hip replacements-I mean my mother didn't have hers until she was in her 80's.
Will you go to a rehab center afterwards for a short while ? In this day and age they ought to have computers available in rehabs.
Hope all goes well for your pre-op.
Love and prayers, Carol
Posted by Cobweb (Member # 10053) on :
Dilly-What you talking about? another rum and coke and no meds! Sounds like you're cruisin' for a bruisin'. Even I know that rum and coke has a high sugar content. Hope you're pulling my leg.
BTW- did you ever tell us how your son did after his harrowing trip to vomitville? I assume he's recovered.
I'm still curious-why the detour for you without meds? Carol
Posted by sometimesdilly (Member # 9982) on :
hey cobs-
i like your funny thread just as it is.
dilly
[ 21. March 2007, 07:34 PM: Message edited by: sometimesdilly ]
Posted by CaliforniaLyme (Member # 7136) on :
Emergency SNOWFLAKES*!)*~!)~!*)*!)!!!!!!!!
That was beautiful, enjoyed this thread a lot!!! Missed it first time around*)!!!! Glad you are doing well with it!!! Sincerely, Sarah in CA
Posted by Cobweb (Member # 10053) on :
I crapped in my pants during this morning's infusion.
It was a real dilemma for me. Here I was, sitting on the couch, minding my own med charts and hanging in there when the first sensation hit.
I quickly looked up at the bag to see how much more drip time I had left. Too much, but somehow the idea of continuing the infusion in the bathroom, sitting next to a ginea pig cage, eyeball to eyeball with Stinky, just didn't seem like the wisest idea.
So I just sat there, thinking of options, hoping maybe, it was a false alarm. The next indication I might be in trouble soon followed. So I did my rock and roll routine to get off the couch and made a mad dash to the computer chair five feet away, knocking over the trash can with the IV pole.
I thought maybe the "sit on it" method would work to hold things back. The computer chair after all is a hard surface. I know it works when I have to pee real bad.
Ever fart in reverse? If you have then you know what I'm talking about. This was getting serious. I tried logging onto Lymenet hoping perhaps the mental diversion would also distract the signals my gut was sending forth.
The bathroom seemed like it was far enough away to be in a another county. Besides ,I eyeballed the path to the bathroom through the unpacked boxes and just knew the base of this antiquated gigantic IV pole wasn't going to fit-even if it was on wheels.
I looked at the bag again and made an executive decision. It was close enough for me to stop the infusion and go for the throne.But remember- I am not a multi tasker, so concentrating on squeezing my butt cheeks while also concentrating on doing the Heparin was not a reasonable expectation.
As soon as I stood up all those reverse farts headed for the Exit at the same time. Like they were in a race to be first in line. So began a serious smear campaign. You win some, you lose some.
Other than that-I'm a genius. TWO socks and a spoon to stabalize my wrist. Popsicle sticks were too messy. But I realized that a plastic spoon, which is even scooped at one end to fit better in the palm of my hand, does the trick.
First pull on one sock to contain tubing. Did you know that's why they're called Tube Socks???? Lick leftovers off spoon, or let the dog clean it. Lay clean spoon on underside of wrist with scoop in palm of hand. Pull on second sock to anchor spoon.
If you can bend your wrist then you're too cheap and need to upgrade your brand of plastic utensils. Nurse K will be so proud of me.
LLMD wants me to stay on the Rocephin for another month. For some reason she seems to think I still have lyme brain.
Cobwebby
Posted by Carol in PA (Member # 5338) on :
Cobby, If you have to walk to the bathroom with the IV, pick up the bag with your free hand, walk to the bathroom, and hang the bag on a hook.
If you don't have a hook in the bathroom, can you use the knob on the medicine cabinet? Or ask someone to buy you one of those self-stick hooks from the drugstore, and stick it on the wall.
I think you need to be prepared for any contingency, as you said you have 999 days allowed.
Carol
Posted by Cobweb (Member # 10053) on :
Carol in PA-WHY DIDN'T I THINK OF THAT? I had to laugh out loud when I read your suggestion because it was so obvious-and I think I'm so smart-and it NEVER occurred to me that I could slip the bag off the pole and rehang it in the bathroom. DUH.
One of the other contigincies that went through my smooth brain was "what if there was a fire?." and I pictured myself trying to crawl through a window dragging the pole with me.
I actually took up a great deal of head space yesterday trying to figure out how I could make my own lightweight portable pole- say with PVC pipe.
Carol in PA-your simple suggestion was a mega watts "lightbulb going off" moment. and I do thank you. Sincerely- even if I am feeling a bit humbled right now.
Cobweb
Posted by lymemomtooo (Member # 5396) on :
sending toilet paper!!!
Posted by JeffM (Member # 8919) on :
Cob,
This has to be the funniest line of posts i've seen on here for a long time!
My bet is you will get through this just fine with this kind of sense of humor.
BTW, ceftin and ketek, not rocephin, were the ones that made me hellherx. I think it has to do with your bacterial load, and where the darn things are hiding.
One bit of advice if you REALLY get sick (I developed neuro symptoms, major cognitive symptoms, and pain level 10 caused by treatment, lasting a good 9 months): do whatever you can to be kind to yourself, take care of yourself, including pain management.
Posted by Cobweb (Member # 10053) on :
Speaking of pain levels- actual conversation with Nurse K:
NK- What's your level of pain?
C- 10
NK-You can't be a 10.
C- But I always wanted to be a 10-like Bo Derek.
NK-You can't be a 10, that's the worst level of pain there is.
C- So if I'm at 10, it couldn't get any worse?
NK- Yeah
C- Then I'm sticking with 10- I don't want it to get any worse.
NK- How about 8 ?
C- I'll say 7. (I was thinking of that moment in childbirth when I was screaming for an epidural)
NK- But I told you last time I was here I didn't want you going above 5.
C- Would you make up your mind-this is beginning to sound like an auction. BIDDA BIDDA BIDDA-do I hear....4 calling birds, 3 French hens, 2 turtle doves, and a spirochete in a lyme brain.
Next time she comes she'll probably just show me that chart of graemlins and have me pick one. or Posted by Geneal (Member # 10375) on :
Dear Carol,
You almost made me crap in my pants reading your posts.
Maybe we can just multi-braid your hair so you look like Bo Derek.
I am sorry you are still in such pain.
Every time I have an LLMD appt. I get asked the same questions (ie pain, fatigue, etc).
I am to assign a number to each question the nurse asks.
One is the worst and ten is the best.
I never know where to rate it. I want half numbers like 4 and one half.
Really confuse your nurse next time, tell her your pain is a 9.5 on the Lyme Richter Scale.
Thank you so much for the laughs. I always look forward to seeing what you have
written and how you are doing.
Hugs,
Geneal
Posted by bejoy (Member # 11129) on :
I think I can, I think I can, I think I can...
bejoy
Posted by Cobweb (Member # 10053) on :
I'm going to stick my tongue out at Nurse K when she gets here today.
My mouth really hurts. Feels like my tongue is scalded and it's painful to eat . Food tastes like cardboard-corrugated cardboard.
I've been sticking my tongue out at myself all weekend trying to figure out the problem. It doesn't look hairy. It's not coated in white. It is GROOVY, but that may just be a retro effect from the 60's.
Maybe we can stick our tongues out at each other to make a comparison.
Bottom line- I could't even finish a piece of German Chocolate Cake with homemade coconut frosting from the church bake sale on Sat. I took two bites and threw the rest away-my mouth hurt so much. Same with pizza. Even when I tried to eat something healthy-like a rice cake with Almond butter it hurt. Like the main ingredient was ground glass.
Anybody want to take a stab at what her diagnosis might be? Remember this is Nurse K.
Cobwebby
Posted by Cobweb (Member # 10053) on :
Nurse K had no idea why my mouth hurt so much, although she did say the loss of taste was probably from the anti-biotics. She wasn't interested in looking at my tongue, but I did get her to stick hers out! Mine's groovier.
Then she went on to practice some sort of voodoo. She stuck me four times without success. Trust me-this was NOT acupuncture . It caused more pain, not less.
So now I'm waiting for Nurse Backup to come.
Nurse K hurt more than my arms-she hurt my feelings,too. I made this great portable IV pole from PVC pipe-cost of materials $3.00. It disassembles easily, is lightweight and original.
I was so proud. When I showed it off to Nurse K, she flicked her hand and said "you don't need all that-just use a hanger" I was crushed. But it did make me feel 40 years younger-like when I was in elementary school and my mother didn't hang my drawings on the fridge.
I think I'll go tuck it back in the bedroom before Nurse B arrives. Maybe I can get her to stick her tongue out,too.
Later Gator, Carol
Posted by stymielymie (Member # 10044) on :
my sincere oppinion is that if you see a longer cylindrical object and NK say bend over. please, please kick her in the knees for me!!!!
her is how the session should go!! nk: god morning you look well today. c: grrrr, yaah i feel marvelous. nk: where would you like your iv today c:in my arm nk: boy your grouchy today. c: you'd be grouchy too if you had 995 days left of iv treatment. nk: roll up you sleeve c: it is up nk:now lets see if we can find a spot thats not all black and blue. c: one more bad needle and you'll be black and blue. nk:now lets see is it the heparin first or the saline. i'll just pick one she won't know the diffence. c:nk you gave me the heparin first , the saline goes first. nk: nah they changed the protocol last week. c: i'm going to change your protocol in 2 minutes. nk:see you tommorow. c: god i sure hope she goes on vacation.
docdave
nk
Posted by Cobweb (Member # 10053) on :
Thanks Doc-that was funny. and I needed a good laugh .
Nurse B arrived. She was wearing jeans ,a blue denim shirt and boots. Upon first impressions I almost said-"you must be Nurse Butch".
However, since she was about to stick me, I decided to stick her with "You look like the outdoorsy type-how have you avoided Lyme Disease". I elected not to bring up the tongue issue,too.
She said she's had it 3 times!!!!!She told me she always got treated right away so there was never any problems.(say what?) At this point I lost my nerve and didn't ask for how long ? I was just hoping the ketes hadn't made it to her brain yet.
Come to think of it though- she was a little OCD. She said she really liked sticking it to people all day, like she was addicted-it's what she does. She said she wouldn't take it personally though if I decided to have the blood draw at a lab, and just get the IV today.
She may like the outdoors-but I am not a happy camper today. I'm beginning to think seriously about a PICC line if this is going to go on much longer.
Just another traumatic day, Carol
Posted by Geneal (Member # 10375) on :
Dear Carol,
Ouch, ouch, ouch and ouch! Too many sticks in one day.
Found burning mouth syndrome on the internet. It also causes change in taste also.
If you get a chance to look it up, see if that describes your tongue and mouth.
I'd look it up, but my kids just ran outside (unchaperoned).
Hugs,
Geneal
Posted by stymielymie (Member # 10044) on :
cobbbbbbby: only 994 days left of abx. maybe you should consider a picc line????? don't decide at 3 days left
994/356=2.8 years left of abx now would be a good time for a picK (picc) don't left your nurse butchers do it.
docdave Posted by bejoy (Member # 11129) on :
I get burning mouth when I have candida or when I'm too acid. If its acid, it goes away when I torture myself by drinking a glass of water with baking soda in it.
I say you win the art project prize!
bejoy
Posted by Cobweb (Member # 10053) on :
for my buddies.
I did go surfing for Burning Mouth Syndrome-and it all fits.You might not want to read it Bejoy .Interesting that it's linked to post menopause since this month is one year anniversay for my total hysterectomy.
I will try the baking soda rinse-but not today-enough is enough. I bought a peroxide oral rinse yesterday-torture.
Carol
Posted by JeffM (Member # 8919) on :
You know what Cob? As I am now, at least for now, on the other side of the pain stuff, like a 2-3, I think I was a 9 10 and underestimated it and undertreated it.
Bad news about IV Rocephin: My daughter just got gallstones. It's off to the surgeon to see if he/she has to take it out. Geez. That poor kid.
And what am I supposed to do? I got 3 more months of rocephin I already paid for. I'm either getting off of it or getting on actigal. We are seeing LLMD tomorrow. I love her. But I'm gonna shake my head very disapprovingly . . . her opinion was that none of her rocephin patients ever got gallstones. And what does the research say? 2-3% BUT that's not long term rocephin users.
Posted by Cobweb (Member # 10053) on :
Hi Jeff- I started 300mg Ursodiol(generic Actigall) 2x daily when I started the Rocephin. I was kind of looking forward to some morphine with a jello chaser if they had to yank the gallbladder.
But I sincerely hope your daughter is all right.
You talked of the odds of developing gallstones with Rocephin. Wonder what the odds are of getting bit by an infected tick?
Wish my luck was as good at playing the lottery! Carol for the kid!
Posted by Geneal (Member # 10375) on :
Dear Carol,
Sorry I didn't have time to provide the link, but glad you found some info on burning mouth
syndrome. Did you see where it is linked to possible disturbances of several cranial nerves?
Maybe this is part of a herx.....
Hoping you get some relief. Warm salt water is also a good to swish around.
In the meantime, I guess this means you can only drink things like ice-cream floats, shakes and stuff.....
Hugs,
Geneal
Posted by Cobweb (Member # 10053) on :
Thanks Geneal-yes I did see the reference to the cranial nerve-and plan to go back and do some more researching. Thanks for pointing me in the right direction.
Burning Mouth Syndrome has simplified my food choices to oatmeal, Slim Fast and canned vegetables. I do live near a Dairy Queen, but even a banana split would be too difficult.
I sent an e-mail to Oprah! Told her I was writing from the end of an IV line because of Chronic Lyme. I realized just before I hit SUBMIT that limiting the message to 2000 characters meant 2000 letters not words! ACK
Half my brain's already been deleted, so going back to delete most of the email was an arduous task.
I've got to go lie down now- I think I'm dying-oh wait-the ketes are dying -the ketes are dying.
This Too Shall Pass-right?
Posted by just don (Member # 1129) on :
MY DEAREST CAROL,,,
If you 'think' you are going to be on IV for quite a while,,,I vote for a port,,,the kind that is under the skin,,,like a pop bottle top(Old enough to know what one is??)
Then let nurse K at it with the needle. As long as she uses the 'right' kind of needle,,,pretty goof proof and only pain is going thru thin skin. Easy to care for, easy to do!!
Other than that Dr. Just Don would RX a root beer float for that burning mouth thingee. I shared one with a guy helping me do stuff this weekend,,,he thought it was a cool treat!!
I will think of you,,,give you the root beer salute at 'float :30', and wish we could only share one(or two)
Posted by Geneal (Member # 10375) on :
Dear Carol,
It is okay if you deleted half of your brain, the rest is still on the hard drive.
I am praying for you and sending you positive thoughts.
This will pass.
I was just thinking this am that I felt as if I had been on a boat for days and had just got off.
This is the strangest sensation.....I feel as if I am rocking back and forth.
If I close my eyes my body actually moves slightly back and forth.
Some days I think it is just a little too much of a process to get well.
I felt much better before starting babs treatment.
I know that I will feel better again, but gave myself about two minutes of a pity party (cried).
Thats about all the time I had to myself before my children walked into the bathroom.
Yes, this too shall pass. You and I will get to feeling better.
I plan on it, I visualize it, I pray for it and one day I will know it.
You are invited to my Pity Party any time you want.
Remember (as my Mom told me growing up). the more you cry the less you have to pee!!!!
Hugs,
Geneal
Posted by AP (Member # 8430) on :
quote:Originally posted by just don: MY DEAREST CAROL,,,
If you 'think' you are going to be on IV for quite a while,,,I vote for a port,,,the kind that is under the skin,,,like a pop bottle top(Old enough to know what one is??)
Then let nurse K at it with the needle. As long as she uses the 'right' kind of needle,,,pretty goof proof and only pain is going thru thin skin. Easy to care for, easy to do!!
Other than that Dr. Just Don would RX a root beer float for that burning mouth thingee. I shared one with a guy helping me do stuff this weekend,,,he thought it was a cool treat!!
I will think of you,,,give you the root beer salute at 'float :30', and wish we could only share one(or two)
I just had a port put in, after 4 PICC lines, and, though it is too early for me to give any clear answeras to whether or not it was a brilliant idea (there've been complications on account of my terrible luck), I can say that I only felt them poke me once when accessing the port (and they've tried, a lot).
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by Geneal: the more you cry the less you have to pee!!!!
Geneal
Great Advice- then you only have to change your Depends once a day!
Well, I couldn't even hold myself up at the computer this morning, but I made it back to the bed and allowed myself to slip into a coma for a while. I popped another Provigil before I lay down, and sure enough, an hour later I realized I was awake and functional again.
JD-my mouth is still stuffed with Atomic Fireballs and I can't spit them out-but when I do-It's a Root Beer Float for me and you! I'm hoping it is a cranial nerve lyme flare. Sometimes the left side of my face droops,too.
Actually I think the nurses from the home health agency are going to petition the LLMD for a PICC line. They're not having fun anymore-and it makes them look bad when they're not successful-makes me look bad ,too.
Wish my veins weren't my smallest feature. Time for me to hang up, if you catch my drift.
CarolcobweB
Posted by Cobweb (Member # 10053) on :
Hey AP-our posts must have crossed in cyber space. Please keep me posted. I don't know the difference between all these possible access lines. I have a Heparin Lock, now.
If I had a port-does that mean my complaints would turn into Port Whine?
[ 28. March 2007, 12:18 AM: Message edited by: Cobweb ]
Posted by Cobweb (Member # 10053) on :
We're having Lent Services at Church this evening -and then Contagious Christian Class. I'm taking my homemade portable PVC IV pole in order to stay on schedule. Dare Me?
Maybe I can get everyone to write their favorite bible verse on it!
Hey- that just gave me an idea.(why I don't know-I think that's for Freud to figure out.) You know how I'm always afraid Nurse K is going to whack me over the head with something. Maybe I could whack HER over the head with it. That's what she gets for dissing my ingenious, soon to be patented, portable, cheap, I mean affordable, IV pole.
Doesn't sound very Christian like now does it. What can I say- I'm a work in progress. God isn't finished with me yet. I like "God doesn't make junk" and neither do I.
If Oprah responds to my email I'm going to ask for a digital camera so I can send you all a picture of it. I'll make millions and be able to pay all our bills-mine and yours!
Meanwhile, my life would be easier if someone could make a cell phone that changes TV channels,too.
Contagious Cobwebby
Posted by Geneal (Member # 10375) on :
Dear Carol,
They say necessity is the Mother of Invention.
I think this applies to you. You wouldn't want to see how I've rigged things in my life just to get by.
Make sure you get that IV pole blessed....don't want any ghosts in there.(Good news is that your nurse probably could exercise them.)
Hugs,
Geneal
Posted by Cobweb (Member # 10053) on :
I need to go back to the drawing board with my portable pole.
The first comment I heard was: "We could call it the Leaning Tower of IV"
followed by: "You need bigger feet" ( I was hoping nobody had seen me nudge my purse over the base to stabalize it but I don't think he was talking about my size 10 hoofers)
Then, speaking volumes with his body language, one man tilted his head to line it up with the pole and added "Well,it does look homemade" HOMEMADE? like that's supposed to be some kind of compliment!
This was serious equipment here. I was going to make a fortune with it. Maybe it was the "J-M MANUFACTURING 1/2" SCH40PVC 1120600PS" stamped on the side that gave it away.
There were some other problems,too. Like being reminded again-that I cannot multi task-I was talking as I swabbed off the end of the tubing to do the first flush with Saline-only I noticed that I had the Heparin syringe in my hand. Oops.
I shut up, recapped it and started over.Next problem occurred when I released the clamp on the line, slowly as instructed, and trying to show off my expertise with IV infusion, nothing happened. I realized to my chagrin the clamp was fully open and there was no sign of a drip.
At first I thought maybe I hadn't made it tall enough which could cause a problem . I wondered about trying to balance the pole on a chair. Nobody said anything-they were all staring at the drip chamber. I was trying to act nonchalant like this happens all the time.
I looked for kinks and tried massaging the tubing like it was a cow teat. Not a drop. Then I straightened my arm and thar she blows, full speed ahead, so I quick bent my arm again to slow it down. Now everybody looked like they were watching a ping pong match with their eyes going from the drip chamber to my elbow which was flapping around like a chicken wing as I tried to regulate the flow.
1 one thousand, drip, 2 one thousand ,drip, 3 one thousand-finally I had it right. I told them it would take about 30 minutes for the infusion .Everyone relaxed and we got back to our discussion. After only about five minutes the man across from me looked a little concerned.
I glanced up at the bag and noticed that it was already empty. OMG This was getting embarrassing and I was afraid I was losing my credibility as a seasoned IVer. I wondered if anybody had died from an overdose of Rocephin by doing a 30 minute infusion in only 5 minutes.
Good news is I didn't blow the vein-and I didn't even have a heating pad on my arm. God does watch out for fools. And this fool has got to go to bed.
I have an early appointment at the dentist's tomorrow. I broke a tooth some weeks back. My dentist used to play football for the Colts. He's got BIG hands for a dentist so you really have to open wide.
Stay tuned for more misadventures, Cobwebby
Posted by Cobweb (Member # 10053) on :
I just ate some popcorn! So the Burning Mouth is better.That's the good news.
My White Blood Count has dropped to 2.9. Would I look silly wearing gloves when pushing a grocery cart around? I'm not sure how paranoid to be about germs.
I think I'll stop eating boogers just to be on the safe side. My nose hairs will respect me more,too, if I become abstinent.
Hangin' in there while I watch a little Bball!
Carol
Posted by Robin123 (Member # 9197) on :
Cobweb, this is one wild ride -- I hadn't looked on General support in awhile, and here you are with a book! I suggest you consider editing and publishing some version of your ongoing memoires here -- it's something else to read.
Prior to reading this, I had thought going on IV treatment was a lot simpler than this. I thought people either get PICC lines or ports put in them. So, showing my total ignorance here of the subject, why are you involved with an IV pole?
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by Robin123:
Prior to reading this, I had thought going on IV treatment was a lot simpler than this. I thought people either get PICC lines or ports put in them. So, showing my total ignorance here of the subject, why are you involved with an IV pole?
Multiple choice :
a) my LLMD is phobic about blood clots in PICC lines.
b.)to hang the rump roasted bag of Rocephin.
c.)to practice my pole dancing at home.
d.)gives me something to look up to.
e.)I'm into heavy metal
f.)gives me something to hold onto when I try to get off the couch.
g.)adds to the decor
h.)I don't like the prospect of doing Bicillin shots.
So there you have it-in a nut shell, or is that from a nut case?
Cobwebby PS-Only those who think they know it all are totally ignorant-like the IDSA.
Posted by lymemomtooo (Member # 5396) on :
Been worried about you lately but been too busy with the ill here to check..Looks like you are ok..Well that is relative. Ha...
Have a nice Easter! Still need to get to the store to get some tiolet paper for you. hugs lmt
Posted by Cobweb (Member # 10053) on :
I'm about to head out for a diagnostic mammo and a bone density scan. My bones are getting less dense as my mammaries are getting more dense.
OMG I forgot to shave too. Will I look like Bo Derek if I braid my armpits?
Hairy Cairy Cobweb
[ 04. April 2007, 11:16 PM: Message edited by: Cobweb ]
Posted by Robin123 (Member # 9197) on :
Very cute. A few more possibilities:
You could fly a flag from it. You could create some fun banners for it. You could attach a weather vane to the top of it and know which way the wind is blowing. You could attach street signs to it and really confuse people. You could rig up some extra lighting. You could put a tophat on it and explain to others that it's your dance partner.
All seriousness aside, can I ask why you chose this option instead of a port? Thx for putting up with my Qs.
Posted by Geneal (Member # 10375) on :
Okay.....I want some of what you are getting through that IV line!!!!
You can keep the boogers though. My children already share theirs with me.
Hope your bone density and breast scan went well.
You may laugh at this, but one of those masks that they wear in the hospital may be a good idea for
a grocery outing. Get some of that purel stuff to clean hands after shopping.
I have had to wear these in public before.....I looked and felt a little silly, but when don't I?
Be careful going to the hospital for all of those tests.....they grow some pretty special bugs in those settings.
I love the "pole" dancing. Could you post a picture or would that be considered "pornographic"?
Since I am having the whole family at what is left of my house for Easter, (not by choice)
I was considering fixing a rump roast.....
I have to admit.....it does make me think of you....and that, of course, is always a good thing.
Hugs,
Geneal
Posted by Cobweb (Member # 10053) on :
The answer is a.) my LLMD is phobic about blood clots with a PICC line.
She must have had some really nasty experiences with it. I will tell you the home health agency that comes says my LLMD is the only doctor who prefers perepheral IV's, and not PICC.
Another sort of plus is that I have a Heparin Lock line four days a week-it gets put in on Mondays, and then I pull it on Thursday after evening infusion. Four days on, three days off.
I just might be getting to where I request a PICC line, because from what I've picked up from other people a PICC line properly placed is easier to deal with in the long run.
I am blessed to have an enlightened insurance company-when the home health agency called to verify coverage for another month,their response was "we have no restrictions for the treatment of Lyme Disease" Makes me think someone in administration has first hand experience.
Any more questions? fire away. Carol
[ 05. April 2007, 02:18 PM: Message edited by: Cobweb ]
Posted by bejoy (Member # 11129) on :
Carol Cobweb,
Have you ever read Anne LaMott? My favorite book of her's is called operating instructions. It is journal of the first year of her son's life.
Your humor reminds me of her. I would love to read your journal of this year when its all put together. Keep it going!
I'm sorry to hear about Barbie and Tommy. That breaks my heart.
Best of luck with your pole dancing. Are you planning to give lessons?
bejoy
Posted by Cobweb (Member # 10053) on :
Hey my friends-you snuck in there while I was editing my last post to Robin.
I had popped another provigil and was lying down waiting for it to take effect when I got to thinking maybe I shouldn't digress so much from the subject of lyme disease. Hence the editing.
Oh Geneal- I thought you'd appreciate the fact that while I was having the mammo the tech kept trying to "reposition me". I asked her what the problem was- and she said she was getting too much belly fat! Sorry I asked. Don't you think she could have used a different term?
That's pretty sad when it's hard to separate your breasts from midrift bulge. Who said "never the twain shall meet" anyway.
Later, Carol PS-Now that I feel confident enough to check things out of the library I will look for Ann LaMott-thanks. I'm reading a pretty funny book , "What the Dog Did" by Emily Yoffe. A must for any dog lovers.
Posted by Robin123 (Member # 9197) on :
Thx for answering -- I still have a question, and I think it's because I've never heard any discussion here at the support groups about IV poles nor seen any demos. Maybe they're just not up for pole dancing...
I usually hear a discussion about whether someone will do a PICC or a port. And the consensus seems to be that they prefer a port. So is that an option for you, or is there a reason that IV pole is the best for now? Thx from the need-to-be-clued-in lymenut gallery...
Posted by lymemomtooo (Member # 5396) on :
Robin, I think Webby's Doc is afraid of the picc line, blood clot potential. My daughter had to have her second one taken out due to a blood clot. She had also had two air embolisms.
They can be dangerous but Carol is having to go the weekly pain route with peripheal lines for regular IV's. She is brave in my book.. This can work if your veins are cooperating.
My daughter was able to go to the elipses or balls, so that she could go back to school with infusion. She would hook up a ball to the line and stick it in her pocket and no one noticed.
Good luck. lymemomtooo
Posted by Cobweb (Member # 10053) on :
At this point Robin I think it's the ignoramus leading the ignoramus-I don't exactly know what a "port " is-or how it differs from a "heparin lock" which I have put in each Monday morning, after pulling the previous one out on Friday.
I wish I could really clarify for you. To put it bluntly I don't know what a port is, except a type of wine.
Lymemomtooo- I think the brave part is letting Nurse K do the sticking! Here's what I don't understand-the ball in the pocket thingy your daughter used?
Hope someone else will jump in to help Robin( and me) understand differences in how IV meds can be administered.
TTFN, Carol
Posted by Robin123 (Member # 9197) on :
Hi Carol -- am only learning about all this, but I did google for IV port and read a wikipedia site about IV med admin.
It says a port is a small reservoir placed under the skin near the collarbone. Evidently meds are injected into it. I'm going to an area support meeting on Tuesday so I think I'll ask the folks there to explain further what's going on.
Posted by Cobweb (Member # 10053) on :
Hi Robin- sorry I couldn't clarify things more for you. My experience is with a Heparin Lock, which looks just like a typical IV . I sit with a heating pad to expand "little squiggly " veins in my arms before they insert the IV catheter. It leaves about six inches of tubing dangling which I cover with a sock. Each week they alternate arms.
The downside beside the weekly sticks, is that on me they seem to be placed in the wrist area, last one was actually in the back of my left hand. That was an owie.
One port, as you describe, seems a lot easier to deal with.Although I wouldn't be able to fit my whole body in a plastic newspaper sleeve, so I don't know how you would keep it dry when showering.
Talk to you later, Carol
Posted by lymemomtooo (Member # 5396) on :
Webby the little balls, well, not really, they were almost softball size, attach to the IV line and empty on their own. They must have some type of pressure that accomplishes the task.
She would attach, put in her pocket and off she would go. She would go to the health room when finished to remove it and throw away the collapsed plastic blob.
I think they might be more expensive but not sure. It was ordered for our daughter so she could go to school. lmt
Posted by Cobweb (Member # 10053) on :
FREE KITTENS-that's what the sign said over the metal cage holding six young kittens-all variations of white, black and grey. Boy was I tempted.
I thought if Bernie had another cat to play with maybe he wouldn't be so inclined to chew on the cords or eat the aloe vera plant.Then again maybe I would just have two cats sitting on my chest at night.
I stood there for the longest time as this other neurotic woman cooed and cuddle with them ad nauseum while her daughter tugged on her arm and said "but I wanted a bunny!"
Usually I say -if it's free it's for me. But I was already holding a small bale of Timothy hay for Stinky. And I know even though the sign said FREE, the first thing I would have to do is call the vet . So free can wind up being pretty expensive.
I forced myself out the door, admiring my restraint, but next time I happen to drive by the pet shop I may stop in-just in case. How do you calculate the cost of love? The return is so much more than the investment.
Meanwhile, me and my pole are going on a retreat this weekend. A time of simplicity. A time of seeing God's face reflected in the women around me. Usually when I go on a retreat I'm a mess on Friday evenings,so unsure of myself, but by Sunday I am whole again.
No TV, No computer, No Newspaper,No cell phone. Just me and my pole and a whole lot of prayer.
Peace be with you, Carol
Posted by lymemomtooo (Member # 5396) on :
Hope you make out ok with your pole..Sounds like a good time. Hope you can relax and find some peace.
But we are to get a ton of flooding rain so hope you either have plenty of cover or are somewhere far away.
My oldest is returning from a week in Dublin, Ireland and Wales. Just hope she does not get grounded at NJ due to snow and ice with no way to BWI. I may end up doing a last minute solo road trip. Haven't done that since the rally in CT. lymemomtooo
Posted by Cobweb (Member # 10053) on :
I'm B-A-C-K!
Best thing I heard was Josh Groban singing "You Are Loved (Don't Give Up)".
Friday night I sat in the back row so as to be inconspicuous. Didn't help much because whenever I tore the celophane wrapper off a syringe everybody would turn and look at me. They were probably hoping I was opening a bag of candy to pass around.
Right after the first meeting, conference, whatever, "Lynn" came over and introduced herself as an infusion nurse. Praise Be to God.
Her first question after hearing a bit of my story was(drum roll)..."Why don't you have a PICC line?" Her second question posed, with some concern in her voice, was... "Does your nurse know you're here?" I told her "no, but I knew that God would provide-and he did !"
Saturday evening they had a service that included communion. I didn't think to ask Lynn her opinion, but with my WBC down so low, I wondered if I should be sipping out of the communion chalice?
They told us the wine was actually just grape juice, so I couldn't rationalize that alcohol content would kill any germs by the time it got to me. Then I told myself , this was the blood of Christ, and as far as I knew Jesus didn't have Lyme disease.
Drinking the last drop from the chalice,I said "Thy will, not mine be done."
Saturday morning , and throughout the rest of the weekend I sat in the front row, PVC,tubing, syringes, heating pad and all, willing to talk to anyone interested about Lyme Disease. Besides the chairs were a lot more comfortable.
Serenity is not Freedom from the storm, but Peace amidst the storm.
Love to all my fellow travelers, Carol
Posted by Cobweb (Member # 10053) on :
The vein blew last night-I'm waiting for Nurse B to arrive. She's the one who delights in sticking people. I took her picture to keep in my Lyme Crapbook.
Cobby
[ 18. April 2007, 09:36 AM: Message edited by: Cobweb ]
Posted by lymemomtooo (Member # 5396) on :
Nice photo.. And by the way, you outlasted my private bet on the time of peripheal lines. My daughter ended with all veins going bad this route.
Maybe you can get a port and have some of that whine, as you posted long ago!!! lmt
Posted by AP (Member # 8430) on :
Sorry I didn't jump in sooner, but here's what I can tell you about Port V. PICC....
A Medi-Port is something a little more permanent than a PICC. It is put in under the skin, and "accessed" with a Huber needle. (I wish I had a photo, but I am pretty sure arg82 has posted one in the past, along with lots of info) Pretty much, it's a needle that varies in length. (mine is 3/4 inch, 22 gauge) at the top of the needle, there's a plastic "wing" that sits flush to your skin. Needle goes straight in, the wing is flush. Then, there's a little bit of tubing to attach infusions to, and that's it.
Cobweb - no need for a full-body sock, you can get a "deaccessed" port wet, and live a "normal" life. I even take a shower with it accessed since there's tegaderm potecting it. I'm just really careful not to expose it to too much water - just in case. My home health nurse knows this, and hasn't told me not to shower.
My port is accessed on Mondays and I deaccess it myself on Fridays, after my last infusion of the week. I was terrified of the pain associated with accessing the port, but it really is nothing.
The hospital let me play with a port before they put mine in. Mine's a bit smaller than a contact lens case, put in just under my collarbone on the right side. The actual line that runs from the port to my heart is very small and goes straight up from the port to my neck, where it enters my superior vena cava and goes back down to my heart.
I had 4 PICC lines before deciding to have a port put in. My body did not like them at all, and neither did my home health nurse - she accidentally "snipped" my last one with a pair of scissors, and had to pull it. In hindsight, they really weren't that bad. There wasn't a lot of lifting or moving allowed, and that was a problem for me, a once active 25 year-old. Some people do manage to have their PICCs in for a good mount of time, but the longest I could manage was 3 months.
As far as medication delivery - it has depended on 1. the medication, 2. the doctor prescribing, and 3. the health care company what the packaging looks like. I did Rocephin with one doctor, and it came in a syringe, I'd hook it up, and push my medicine; I had Primaxin, Clindamycin and Zithromax with another doctor, and had the big bags of saline with a glass vial of meds I'd mix for every infusion. I had a beautiful IV pole for that one (which came in handy every time there was a stampede in the upstairs apartment). This time, I have home health and they deliver Clindamycin (and for a time Primaxin) in those pressure-release balls. And, just a note - with the PICC, infusions would take 30mins, with the Port, it takes about 1.5 hours - something about the valve inside the port.
Hope this helps...
Posted by just don (Member # 1129) on :
I have a port under my skin. It is about like an OLD TIME(like me) pop bottle cap that moves around under there. It itches a bit now and then,,I have had it for years. I planned on keeping it till I was all perfectly well. That might be 32nd of never,here!
Yes,just a needle stick thru tough skin. I think it is easier to keep clean than a picc, no sleeves etc.
Seemed better for what I did every day , pulling the picc accidently,or dirty was a real prob for me.
If your insurance will pre approve,,,just do the port,works great long term. I rarely ever flush mine like supposed to BUT it still keeps on ticking,like me. If I lose its open ness I pull it like the doc wanted to years ago. no iv meds ,no insurance,they will pull it first time they have an excuse.
Unless I find some magical formula to IV me back to health for free laying around!!
By the way is Roche still doing the free needy meds?? Problem is they wouldnt do it long enough to really do any good,for me.
check to see that putting in the port doesnt trigger 'managed care',,,it did for ME,it was the beginning of the end to my insurance!!! from there they priced me right out of their problem!!
back to question at hand,,,a port is worth 10 piccs,hands down!!Inviting ya over for root beer float thirty today!!! plenty for all!!mostly--just don--
Posted by stymielymie (Member # 10044) on :
so by my calculation:
999-35= 9something 964 days left lets ee thats 964/7== 137 iv lines.
NOW THAT'S SOMETHING TO LOOK FORWARD TO COBBY
DOCDAVE
Posted by stymielymie (Member # 10044) on :
so by my calculation:
999-35= 9something 964 days left lets See thats 964/7== 137 iv lines.
NOW THAT'S SOMETHING TO LOOK FORWARD TO COBBY
DOCDAVE Posted by Cobweb (Member # 10053) on :
Okay- so Nurse B came today. She was here for over an hour-and I'm trying to figure out why she never sat down. She didn't even put her bag on the floor.
With the condition of my veins she doesn't think I'll make it through another week of peripheral. I wish I could remember the medical term for the reason Monday's stick went south. All I can tell you is it feels like the vein turned to rope.
She was persistent today though in trying to find another one. She used the blood pressure cuff instead of that rubber thingy and my hand turned purple, but she finally found a vein that held-at least for now.
She was also trying to coach me on how to get my LLMD to agree to a PICC. Something about not making the doctor defensive. I really don't want Bicillin Shots. Right now I'm too exhausted from this mornings session to think.
I don't mind if anyone says "told you so". We live and learn. I'm ready to cry UNCLE. Notice I've changed the subject title.
Back at you later- Carol
Posted by Robin123 (Member # 9197) on :
Sorry to hear, but I didn't see how you were going to make it through all those IVs. Duly noted by Stymie. People in support groups here seem to prefer a port.
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by AP: I just had a port put in, after 4 PICC lines, and, though it is too early for me to give any clear answeras to whether or not it was a brilliant idea (there've been complications on account of my terrible luck), I can say that I only felt them poke me once when accessing the port (and they've tried, a lot). [/QB]
Please define "terrible luck" with PICC lines. Inquiring candidates want to know. Posted by Cobweb (Member # 10053) on :
Phlebitis-that's the new word added to my vocabulary. I already knew "bruise" and "popped" and "collapse".
Now as for the bets on how long it would take for me to cry UNCLE...
Posted by AP (Member # 8430) on :
quote:Originally posted by Cobweb: Please define "terrible luck" with PICC lines. Inquiring candidates want to know.
My first PICC line got a slight infection around where it entered my arm, it was pulled. My second delevoped a clot, but was also extremely "positional" - turning my head, bent over backwards while hopping on one leg, we couldn't get my labs through it, and it would take hours to infuse. It was pulled... My third I can't remember, it wasn't in long though. And my fourth took 1 hour, 53 minutes to insert because my veins were shot. It jabbed my heart when I was hit by a car while crossing the road, and after 3 months, my home health nurse accidentally snipped it with scissors, and had to pull it.
I was on the table, and the doctor had the scalpel to my arm to put the fifth in when I rolled off of the table and made an appointment for my port. They were quite po'd when I left them without an arm to violate.
Posted by Cobweb (Member # 10053) on :
Well, 6 sticks for 4 days of infusion last week, so even LLMD says picc line may be the way to go. I have an appointment with her May 1st.
Meanwhile-I have a question: Why is it again we have to feel like we're going to die in order to live?
I don't think it's the IV rocephin-I think it's the oral Doxy-or perhaps the combination. I wish I had more faith in the herx theory because I sure don't have the patience.
Do they let you use the PICC line for plain old hydration,too-I mean, maybe I'll finally be able to get enough fluids into me for flushing toxins.
I think I can, I think I can, I think I can, make it through this day for a better tomorrow.
Carol
Posted by lymemomtooo (Member # 5396) on :
Carol, if you get a picc, I think I read somewhere that you should not do blood draws thru it. They can cause damage or collapses. The nurse always used it since my daughter was not agreeable to any extra sticks.
Make sure you are detoxing!!!!! lemon and water, chlorella, and whatever else you can come up with..lmt
Posted by bettyg (Member # 6147) on :
hello to my dear friend carol!
i haven't followed your story since i had my hip surgery and just now getting back on here trying to catch up with 1 month of posts!
but you've been in my heart, thoughts, and prayers continue to be headed your way my friend! Posted by Cobweb (Member # 10053) on :
Is muscle twitching considered exercise? Posted by Geneal (Member # 10375) on :
Dear Cobweb,
I am exercising my fingers as I am replying to you.
Wow....tough couple of weeks, huh?
I wish I had a magic wand where I could come in and wave all the bad stuff away...
I don't.
I do have the Power of Prayer...More powerful than a magic wand.
I am sending you healing thoughts and prayers.
I think of you all the time....
Hang in there.
Yes, muscle twitching does count as exercise as it does burn calories.
Hugs,
Geneal
Posted by stymielymie (Member # 10044) on :
ok new count cobby 999-46= 944/7= 134 sticks plus many misses
so where is your picc line?????????
cobby, how much weight did you gain from all the fluid from your bruising.
i beat you go crusing for a brusinf knowing you!!
may try crystal light lemonade. that's what i drink, more palatable. i guess acorn can't drink this cause she's got no palate, lol
let me at this doc of yours, timonium i guess??? i know how to handle timoniumites. she be eating out of my fingers when i get done with her.
daveey Posted by Cobweb (Member # 10053) on :
Next appointment is May 1st. I'm all ready for dancing around the May Pole.
I really think the rocephin has helped me the most and want to continue with it. You know for sure if Doc agrees to set up picc line-y'all will be the first to know.
Never thought I'd look forward to getting a picc line.
Webby
Posted by Cobweb (Member # 10053) on :
Tomorrow morning-8AM-I'm getting my picc line! I'm happy, scared, relieved, nervous. I'm going to act grownup and nonchalant-but my blood pressure will probably give me away.
Wish I didn't have that middle aged flappy arm syndrome.Even when I flex my muscle it jiggles.
Nurse K is scheduled to come Friday morning for a dressing change.
Wobbly wiggly Webby
Posted by bettyg (Member # 6147) on :
hi carol, thoughts and prayers headed to you for your picc line tomorrow am!
hope this starts doing the trick to you! Posted by cantgiveupyet (Member # 8165) on :
Hey Webby, hopefully all went well this AM.
Post when you can. You are braver then me!
Posted by bejoy (Member # 11129) on :
Did ya get it? Did ya get it?
I have to admit, I'm a bit jealous. Nobody would give me one. (Pouting)
You get to have something to show for all this lyme business. Nobody can discount a woman with a medical instrument visibly attached to her body. I hope you get adequate sympathy worth all the anxiety this has caused! (Kind of facetious, with a grin.)
All I get from people is the "but she looks so good...for her age" or the smug sideways glance because they gained less weight than I did over the winter.
Do you get to name it, like a special pet that follows you around?
bejoy
Posted by stymielymie (Member # 10044) on :
yes a picc line with a cast on the other arm, gets lots of respect, pity, all the things you love and need.
so now its 999-68=931/128= 7.2 picc lines
so now you only have 6.2 picc lines to get all that medicine in you.
picc lines are not that bad they give you local in the area, sonogram the vein, the stick it with a 18 gauge shotgun needle, xray, done.
hope all is well and we get you smileing again in timonium. i think that might me an oxymoron.
or maybe i'm a moron and your an oxy. do we now have to hear about nurse kracthit and the picc line adventures.
we can write about you the avdventures of carol,cobby and walter meet Nurse Kratchit in one flew over the cookoo's nest.
docdave Posted by Cobweb (Member # 10053) on :
And I didn't even shave !
All I can say now that the numbing medicine has worn off is OWWWWWWWWW. I know I know-this too shall pass.
The procedure was all very professional. Put in by a doctor-probably because every other sentence out of my mouth was-"I have a heart problem-as in ventricular tachycardia."
Having been flatlined once I really did not want any more drama than necessary. Dr. took note and reassured me that although the catheter would be close to my heart it would not be close enough to trigger any unwelcome episodes.
I got one of those nice warm blankets they give you in the hospital. But I didn't get a picture. I wanted a picture-since it was all tracked by sonogram and they showed me the screen after placement.
My 18 year old daughter went with me. She was very solicitous and caring in front of the nurses and doctor.Carried my purse, kept track of discharge papers,opened doors, did a reasonable job driving home (I bribed her with 10 bucks if she didn't do anything which caused me to grab the dashboard or ram my foot through the floor board trying to put on a fantasy brake)
As soon as we got home she reverted to type, hopped out of the car, said "well, bye, see ya later" and took off in her own car, leaving me in the dust .Didn't even collect her bribe.
And Stymie, I have had fun flashing my PICC line at everyone, whether they were interested or not. I figure to milk it for all it's worth-especially now since there's quite a bit of bruising.
Okay- on tonight's episode of Grey's Anatomy a woman died of septis after having a central line put in-and I'm about to record the evening news with a segment entitled "Lyme Disease-is it fatal?"
So here's one more Maxine for the road...
Cobblestone Jelly
Posted by Robin123 (Member # 9197) on :
Thx for the update, Carol. You're a trooper. Does this mean you still have your pole and your nurse?
Posted by Geneal (Member # 10375) on :
I was thinking about you last night....
Hope you are doing well.
Haven't seen you posting anywhere else and it kind of got me worried about you.
I am glad you got the picc and that you sailed through the procedure.
Just wanted to let you know that you are being thought about and prayed for.
Hugs,
Geneal
Posted by lymemomtooo (Member # 5396) on :
Glad you now have a picc..But be careful.. It must have a lock of some type at the bottom. Can't remember what it is called. Do not trust just taping.
My daughter's first one, was just taped in and in hot weather with some persperation, it came out like a string of spaghetti.
Keep it flushed as they recommend. And there was an old post that said you should not do blood draws thru the picc. The nurse always did them on our daughter and her second one had two ends. So one was used. It ended up no longer working.
Then one day there was some redness and the arm was swollen and a blood clot had formed. Second picc gone.
I think rocephin and doxy thru the picc was the best protocol we had but the herxs were pretty bad..
Good luck my friend..Hugs. lmt
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by stymielymie: ok new count cobby 999-46= 944/7= 134 sticks plus many misses
so where is your picc line?????????
Mid left inner arm approxamately 4&5/8ths inches above the crease of my elbow. but the bruise is approximately 3&3/16th inches long and 2&7/8 inches wide. The catheter itself is a Vaxcel/4 fr exactly 40cm long, inserted via the left Basilic. Oh wait you didn't ask for all that, but I 'm still a functional member of NA-narcissitics anonymous and like to talk about myself-and since this gadget is now a part of me it's hard to shut me up. -------------------------------------------------
cobby, how much weight did you gain from all the fluid from your bruising.
Interesting you should ask because I have gained a bit of weight-before lyme I had a double chin, almost a triple chin but then I lost a bunch of weight and it (they)turned into a turkey wattle. My youngest used to sit next to me and flap it back and forth -fascinated.Yesterday my oldest daughter told me I was looking better because my chins were filling in again ----------------------------------------------- i beat you go crusing for a brusinf knowing you!!
refer to "so where is your picc line?" -------------------------------------------------- may try crystal light lemonade. that's what i drink, more palatable. i guess acorn can't drink this cause she's got no palate, lol
I've got a palate but no sense of taste -but has that stopped me from eating-noooo. b] -------------------------------------------------- let me at this doc of yours, timonium i guess??? i know how to handle timoniumites. she be eating out of my fingers when i get done with her.
[b]Come on up for some crabs and I'll be eating out of your fingers,too. ------------------------------------------------- daveey
Glad you guys are on my side. Nurse K just arrived-should be interesting-
stay tuned, Cobby
[ 04. May 2007, 10:49 PM: Message edited by: Cobweb ]
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by lymemomtooo: It must have a lock of some type at the bottom. Can't remember what it is called. Do not trust just taping.
Dr. stitched it in place. _______________________________________________-_
Keep it flushed as they recommend. And there was an old post that said you should not do blood draws thru the picc.
I talked with LLMD and asked her about blood draws- she wrote in the orders-no blood draws from picc-thanks for the reminder! _________________________________________________ Then one day there was some redness and the arm was swollen and a blood clot had formed. Second picc gone.
I'm doing heperan twice a day and 325mg aspirin-seems like a lot of aspirin,I may double check on that one. _________________________________________________
I think rocephin and doxy thru the picc was the best protocol we had but the herxs were pretty bad..
I like the rocephin, but I can't tolerate the doxy. She has me doing flagyl again (orally )
Good luck my friend..Hugs. lmt
Glad you got my back LMT. Carol
Posted by Cobweb (Member # 10053) on :
Cavey!!!!!!! Nurse K actually looked professional today. Not only did she lay down a sterile field pad, she wore gloves AND a face mask when she changed the bandage on my picc.
I was really going to come out of the closet tonight with my handy dandy portable pole-and do an infusion on the sidelines of my girls' evening softball game. Thought it would be a great way to bring attention to Lyme disease. If anyone asked me where I got it I could say "Right here" But the game ended before I needed a dose.
Nurse K has racheted up her sterility now there's a picc involved-thought I would tell you in case you were losing sleep over it!
Cobby aka Webby to you.
Posted by Cobweb (Member # 10053) on :
Geneal and Robin-as always-thanks so much for your thoughtfulness. I do still have Nurse K-actually I've become buddies with several of the nurses.
And I still have my pole-even took it out in public today and infused during a meeting. Several people inquired about why I was doing IV, most assumed cancer, great opportunity to talk about lyme disease. I really need to get some pamphlets to give out.
One person empathysed(sp) with me because she said she has Lupus. She walked away before I could grab her and say "bet you fifty bucks it's lyme disease".
Oh well-I plan to flaunt my picc line as a red badge of courage-and hope to point at least one person in the right direction.
Now I lay me down to sleep, Picc line in my arm so deep. If I snore before I wake Shake me gently for heaven's sake!
Love, Carol
Posted by lymemomtooo (Member # 5396) on :
Good luck my friend..I know where some pamphlets might be found..Let me know..Things are too hectic here to make a Bal'more run and not sure I wouldn't get lost.
May 10th..come to the support group meeting. A vet is doing a talk on Lyme disease in pets. A subject you know well but might enjoy..hugs. lmt
Posted by Cobweb (Member # 10053) on :
Just for you AliG from the Been There Done That files.
ps- It's been over 6 months and I love my IV line!
Best Wishes, Take Care, Carol
Posted by AliG (Member # 9734) on :
You are truly a special person Carol It's amazing how you can take something like this and make it so funny. Thanks for the tip on how not to crap my pants
It took me two days to get through this and it's quite possibly some of your best work.
I'm going to bookmark this thread so I can read it again after I go to the IV ID. It's really been very helpful, but I'm sure I'll need to review for details until I get some memory back.
I vote to start a pinned thread at the top of "General Support". It could be called Lyme"Twisted" Helpful Hints (or something like that).
We could put things like the Cobwebbian-Stymied Classics in it, for when we need serious laughs for serious things. DocDave really compliments your humor well! You're a great team.
I'll definitely be referring back to this one! It's Golden!
Thanks again for being you. Ali
PS- Maybe LouB would let us do that if we title it with a disclaimer -"Not for those who need to take things seriously". What do you think? You & Stymie could have your acts immortalized on Lymenet. I like the idea.
I guess I must have been in that Lyme black hole when all this was going on. Sorry you had to go through all that. Glad you survived with your humor intact!
[ 07. September 2007, 08:02 PM: Message edited by: AliG ]
Posted by Cobweb (Member # 10053) on :
Only one problem- sometimes Stymie really does get serious. Especially when he thinks he's cured!
Wanted to pass on another helpful hint- I wear a long sleeved shirt to bed-to contain any tubing that might come loose while I am sleeping.
I have a cat, Bernie-who thinks anything that wiggles needs to be pounced on , chomped on and pulled from its moorings.
Any more questions just give a holler.
Take Care, Carol
Posted by Cobweb (Member # 10053) on :
Hey, I don't know how this made it to the top with the last entry on the 7th, but since it's here, I thought I would do an update...
I am doing simply MAH-VA-LASS-LY, darling. At least for right now. I really do not want to think about any dramatic backslides-but for right now-
Nurse K calls me the Picc Line Poster Child.
Going into my 8 month of IV rocephin. Every time I have an appointment I expect my LLMD to say it's time to pull it.
Instead, she says I'm doing so well she doesn't want to pull it. That and also the fact I am antibiotic challenged in that I have a longer list of antibiotics that I am allergic to than ones that are either untried or okay.
It is my fervent hope and prayer that once the line is pulled I will maintain my current level of functioning. I'm even thinking of going back to work!
I will confess to a nagging fear in the back of my mind that a blood clot or sepsis is going to catch up to me the last day of treatment and do me in. Such a pity.
Meanwhile, my days are good. I love Fall. I'm moving to better digs soon. All is well.
Cobby
Posted by AliG (Member # 9734) on :
The boost was just me getting ready. I put it up where I can find it because I'm so challenged right now that a herx would likely make it impossible for me to find again.
I'm so glad you're doing so well. That knowledge will probably make it easier to take what I've just read about the insertion of a PICC line.
They should be calling me any day now. My instinct tells me to run & hide or move & change my phone number. Of course then I realize that I don't stand a chance of getting well if I do that.
In my head, I've been trying to clean my house since Monday. I just can't seem to make my body do it.
I'd do the in-laws-are-coming clean up, but at this point, I've exhausted all the hiding places for clutter. That's why I haven't had the in-laws over.
Thanks for the inspirational update. I really needed that today!
Ali Posted by Cobweb (Member # 10053) on :
I was reassured that a doctor in a surgical room full of high tech equipment put mine in.
I did have to ask her though if she had ever done this before-after I was strapped onto the table.
Of course it was something they did routinely. No big deal for them-but it sure was for me.
Wish I could keep it forever now. Not really- but I will miss it.
I was afraid they wouldn't find the right vein or artery or whatever because that part of my arm is well, a little flabby, okay a lot flabby.
I'm not really fat, I just have some parts that are "softer" than others.
Please post when you have an exact date.
Carol
Speaking of cleaning house-make sure you have a light weight vacuum cleaner-one on each floor if you have a multi floor structure.
Posted by Parisa (Member # 10526) on :
My husband may be starting IV Rocephin in a month or so and he doesn't like the idea of a port. With your colorful journey documented here, I think I'll be able to show him why he doesn't want to go the IV route.
Did they put you out or just use a local when they put the PICC in? With my husband's lung problems, the less anaesthesia the better.
Posted by AliG (Member # 9734) on :
quote:Originally posted by Cobweb:
I was reassured that a doctor in a surgical room full of high tech equipment put mine in.
AGGGGGGGGGGGGGGHHHHHHHHHHH!
They're gonna come to my house?!!
I read that they're supposed to take an x-ray after they put it in. How are they gonna do that here?
I have visions of Nurse Karen whacking me over the head with something to knock me out so she can put the PICC line in.
I really should have asked more questions. If only I hadn't been so freaked out about having to go to an ID for this!
Tomorrow will be a "few" days. I really hope they call and fill me in so my head doesn't explode.
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by Parisa: Did they put you out or just use a local when they put the PICC in? With my husband's lung problems, the less anaesthesia the better.
I was fully awake. They just gave me a local in the arm.So the only part of the process that hurt, but not too much, was the needles used for local anesthesia.
Cobby
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by AliG:
quote:Originally posted by Cobweb:
I was reassured that a doctor in a surgical room full of high tech equipment put mine in.
AGGGGGGGGGGGGGGHHHHHHHHHHH!
They're gonna come to my house?!!
I read that they're supposed to take an x-ray after they put it in. How are they gonna do that here?
I have visions of Nurse Karen whacking me over the head with something to knock me out so she can put the PICC line in.
I really should have asked more questions. If only I hadn't been so freaked out about having to go to an ID for this!
Tomorrow will be a "few" days. I really hope they call and fill me in so my head doesn't explode.
Oops- didn't realize you were going to be subject to a home invasion insertion. Anyway- I have heard of the procedure being done at home-so it is possible.
There are portable xray machines.
Nurse K keeps telling me how she's going to pull mine out when the IV is discontinued-and I'm thinking of beating her to the punch, so to speak,
snipping the stitches and yanking it out myself-well maybe gently pulling it out myself. Then when she walks through the door I can yell "SURPRISE"
Of course special measurement is necessary to be sure the whole thing is pulled-with no pieces left behind.
AliG-breathe, just breathe. Think of some object-picture, candle, knicknack, whatever, you can focus your attention on, and just breathe-slow deep breaths.
Easy for me to say Huh? I'll be thinking of you all day, until I get a report back.
Carol
Posted by Parisa (Member # 10526) on :
Thanks for getting back to me Cobweb.
Posted by AliG (Member # 9734) on :
OK - Reporting in:
The nurse finally called me last night. She's coming between 10:30 and 11am today. (She called again, now it's 12:30)
She shouldn't have any trouble finding me because she just had another patient on my street not too long ago. (Out of 5 families I've talked to, 5 have a Lymie , that's a whole other story)
I'm getting a Midline Catheter instead of a (PICC)Central. The midline stops up near the shoulder.
I've been trying to create some clean space. I don't remember if you mentioned this, but one of the papers they want me to sign is acknowledging that I'm aware that one of the side-effects of Tx could be DEATH. Nice way to put the patient at ease (NOT!!). Another one in there is the Advanced Directive (Living Will).
The good part is, I scared the bejeepers out of my DH & DD with tales of SEPTIC SHOCK and DEATH!!!! I actually got a lot of help cleaning. My nurse will probably report back that I'm fine . Either that or she'll think I can afford a cleaning service & send someone back to rob me.
IT'S IN!! Oy, vat a pinch! My hubby & DD were here to watch, so I couldn't act like a big phobic baby. They're gone now, so I have to go to bed and pass out for a while. My BP was 80/50 after she got it in & I was infusing.
I am the biggest baby in the world, if I can make it through this, anyone else has nothing to fear!
All in all, not nearly as bad as I anticipated. Now if you'll excuse me, I'm going to go throw up & then lay down.
Posted by Cobweb (Member # 10053) on :
This card is just tooooo cute. Enjoy remember- no viruses or ticks attached.
up for AliG How are you doing?????
Posted by AliG (Member # 9734) on :
Hi Carol,
Sorry to take so long to find this. I've been a bit tired, achy and confused.
You are just TOO sweet!!! Thanks so much for the precious card!
I had increasing fatigue Monday & Tuesday. Wednesday I felt sorta like I'd bit run over by a bus. (I guess it was "flu-like" ) All I could think was "YAY ME!" I feel positively awful, I must be on my way!(I hope)
Thursday my arm was REALLY sore & there was new bleeding at the sight, so I called the nurse. I put heat on my arm & took some Aleve. She would call me later to schedule a dressing change for me for Friday.
Then, when I went to start the infusion. I guess I had gotten cocky & didn't think I needed to read each line on the sheet anymore.
I got everything out, hung the bag on the pole and spiked it. I stared at it wondering why it was dripping into the chamber.......When it poured off the counter & onto the floor, I realized I never set the roller clamp.
Then I had to call AGAIN & confess to being an idiot and wasting 1/2 the bag. They're going to send me another. I had to toss that one & start over. How embarassing
I started a new one and THE DANGBLASTED THING WOULDN'T DRIP!!!!! I tried moving my arm every which way & checked all the clamps 10 times. I looked for kinks where the clamps had been and then moved my arm around AGAIN.
I gave up after close to an hour of that nonsense & called the poor nurse AGAIN. She had me flush again with saline, no good. Then go lay down on the couch & hike the bag up to the ceiling, Houston - we had lift off! I couldn't help but think of you.
Then I had to go take my ailing Dad grocery shopping in a total deluge of torrential rain. (joy.)
Lucky me the case of water bottles I had to get for my DD to take to school was at just the right hight to slide onto my good arm & slide off onto the top of the cart. Maybe my day was looking up!?!
I told my Dad (heart condition) at least ten times, with my sternest "I'll kill you if you don't listen" expression on my face, "DON'T YOU DARE TRY TO PICK THAT UP!!!"
I had to get something else & he wandered away with the cart. (That's a little game we play. Whenever I stop to get something I need, he wanders off & I have to find him, lugging around whatever I've picked up.) I called him several times & he finally came back.
I got that thing & had one more thing to get. He asked if it was OK to get in a line. I told him yes "BUT DON'T YOU DARE TOUCH THAT WATER!!!" What do you think happened?...
I got to the register and started putting groceries up, snarling, growling & mumbling under my breath. After a couple of minutes he says to me "I don't think I should have done that".
It's not bad enough that I'm , I have to try to take care of my Dad who's worse!!!
I was soaked through to the bone by the time I loaded/unloaded all the groceries. What a freakin' day! YAY ME, I survived! I even cooked dinner before I crumbled into bed.
Yesterday, Lana came & pulled the line out a teense, cleaned up the blood & changed the dressing. She even started the infusion for my stupidness. All went well. HOORAY!!!!
Then went & got dad to take him to his pain management and lunch. Another joyful day (NOT!!). I'm convinced that my Dad is one of the most depressing people I've ever known in my life.
My Mom & I have realized that, no matter how happy or positive you start out, in one conversation my Dad can have you wanting to crawl back into bed and pull the covers over your head.
Last night I didn't feel up to cooking again and, since we haven't gone out in a very long time, I convinced hubby to meet DD & I for dinner near his office.
I had 2 cranberry & tonics and ended up feeling plastered driving home. My vision was screwy, my head was wooshy and I had something like a small hangover headache.
There was a detour which threw me off my bearings so I made a wrong turn & took my own detour, in a big circle, through a development that I din't know they had put in.
I had started feeling REALLY tired around 5pm before we went. Do you think that my "drunken" episode might have been caused by the sugar in the cranberry & tonic or do you think it was Herx related? It was pretty scary. I was still screwed up when I went to bed and the headache was slowly worsening.
I was doing a bit better when I woke up this am, though I feel the need to go back to bed again now.
It's funny but I've been thinking of you often. It's almost like you've been keeping me company while I'm going through this, even though I haven't been talking with you.
I even heard your (imaginary) voice in my head telling me to "breathe, breathe" when she first set up and touched every single thing 10 times with her bare unwashed hands.
I kept telling myself, "wait for it......, wait for it....". She put on gloves and was very careful not to touch anything sterile, so I exhaled.
I wonder if that was why my BP was 80/50 (from holding my breath)?? (Actually it was the same when she came yesterday.)
I'm so glad I read your thread, before starting on this adventure, because anytime something screwy happens I think to myself "Carol survived this, I will too".
Thanks again for bringing it up for me.
oddly happy to feel so crappy, Ali
Posted by Cobweb (Member # 10053) on :
Yeah for taking the time to reply-thanks.
And about the forgetting to close the clamp-well-it happens to the best of us -more than once.
Only I never fessed up and called the nurse-I just went with what was left. Good for you-you have raised the bar for me.
My turn to go out to eat tonight-but no cocktails-unless it's shrimp coctail. YUM.
Talk to you later, Carol
Posted by AliG (Member # 9734) on :
Mmmmmm shrimp cocktail!!!
I didn't have any cocktails, just juice & tonic. I'm guessing it was some brain damage thing (hopefully herx related?)or food sensitivity.
I'm guessing that didn't happen to you? Uh-Oh.
I hope you had a great dinner!
You didn't try to get a buzz off of Cranberry & tonic, French onion soup & salad, did you? Posted by AliG (Member # 9734) on :
There was sherry in the soup. I think that's what messed me up. Posted by Cobweb (Member # 10053) on :
Just thought I would tell you a little adventure I had with my picc line tonight.
It's after midnight, 12:40AM to be exact-and I'm waiting for the Nurse on Call to come.
I went to a friend's house to see their newborn baby girl, Olivia, and to cook dinner for them and maybe clean up a little.
I was there to help-and I left the place in a bigger mess then when I arrived. OOOPS
I did make dinner, and had every intention of cleaning up the kitchen after I did my evening infusion at their house.
I had my handy dandy homemade portable pvc pole with me. ( which reminds me, this may be my last week-maybe I can send it to you when I'm done?)
Nurse K came this morning and changed the dressing and gave me a new extension -with a "better than ever" blue cap on the end.
She said it had a real good seal so it may be a little harder to detach. I have news for her- it was a LOT harder to detach. In fact it didn't detach, at least from the right end-the whole blue cap came off-
and blood from my line went squirting everywhere-because I kept whipping my arm around trying to catch the end of it.
See -I had the blue cap unexpectedly in my right hand, and I'm waving my left arm around trying to grab the extension with my left hand-sort of like monkeys do when their scratching their armpits.
I had visions of bacteria entering the exposed line and acting like heart seeking missles. Now I'm sure I'm going to die of sepsis.
Such a pity-this is my last week, I think. To come this far and be done in by a faulty blue cap...
At least maybe my kids will live happily ever after on the lawsuit settlement.
I got a hold of the Nurse ON Call who said she would meet me at my place, so I shot out of there,
leaving the kitchen in disarray, the garbage can overflowing, blood splattered on their sofa ,geesh I didn't even look at the rug, and the contents of their first aid kit strewn all over the place.
-------------------------------------------------
update-Nurse On Call got stuck on 95 in a bad accident-crawled along for 6 miles!
She had a spare extension(with a white cap) in her bag, and it was changed in 5 minutes.
So I'm good to go again, as long as no creepy crud got in the line during the mishap.
Moral of the story- ALWAYS hold the extension cap when detaching the infusion line. And don't use plyers.
Side note-baby Olivia slept through the whole thing.
Take Care, Carol
Posted by Cobweb (Member # 10053) on :
up for Ali
Posted by AliG (Member # 9734) on :
Thanks for the warning! Remind me not to invite you over, what a crappy houseguest! Aw heck, in my mess nobody'd probably notice a few blood stains.
I've actually wondered, quite often, when I first grab the part at the end of the line that connects to that port thingy, if I could accidentally unscrew it. Now I have my answer. I'm sure glad I haven't done THAT yet.
That brought back memories of when I was a child and accidentally broke off the needle of the sewing machine in my thumb. I ran up the stairs screaming and shaking my hand as fast as I could. Needless to say the walls and stairs ended up looking like spin-art. (my poor Mom)
Maybe blood-spatter will end up being the latest designer craze and you'll have done their home for free.
Let that be a lesson to you.... that's what you get for trying to do something nice. Isn't it the thought that counts?
I've just been doing gymnastics, acrobatics and circus tricks the past few days, trying to get my IV to drip in under an hour and a half.
The nurse told me to call the pharmacy to tell them I need a home pump if it happened again today, after applying heat for 20 minutes before.
They want someone to come out & evaluate my line! If they want to pull it & put in a new one they'll have to catch me, tie me down & knock me out first!
Nurse called she's coming out. May pull the line and stick one in the other arm. She said she can place a PICC, but then I'd have to get an X-ray taken.
It's likely that there's either a clot or inflammation causing the blood to back down the extension line & back down out of the site.
I've had a chance to think & I'm betting inflammation. That's probably why it quits dripping after about 1/4 bag, the drug's probably aggrivating the vein more.
Oh, crap!
I'm glad you didn't bleed to death last night, I'd have noone to keep me company. Somehow I don't think God would reconsider & let you come back if I started a thread to protest your death.
Don't do that again, OK? (LOL) ((((big hugs)))) Ali
Posted by AliG (Member # 9734) on :
The nurse came & went.
It was NOT good.
I have two more puncture wounds & another line.
I came within seconds of passing out from the horrific pain after she tried the first time. (I'm not really very squeemish about blood at all)
I managed to make it in to the couch feeling like I was going to vomit and lose control of my bowel, while unable to really feel my feet. I felt a rush of heat in my head.
"sometimes people get a vasovagal(sp?)" That's why she prefers to have the patient lying down.
I'm thinking maybe, because I have the parasthesia in my right hand, my nerves on that arm might be more sensitive?
My nurse is very sweet & has a wonderful personality but I think I'm starting to not like her so much.
I hope you're doing better today than last night.
Ali
Posted by Cobweb (Member # 10053) on :
I can't imagine having a line put in at home. I would so be a wreck.
so why was the other one pulled?
I wanted to tell you that to avoid clots my routine is:
1.Saline Flush/infusion/heparin flush repeat in AM and Pm for 4 days
2. take 81 mg aspirin once a day 7 days a week
3. on three days off from infusion I still flush 2 x day with heparin
4. also switched bandage brands-allergic to the first one which was Tegaderm
5. I also take Actigall(ursodol) 2 x day to prevent gallstones while on Rocephin
Ali I am fine today-seeing LLMD tomorrow. Now that Fallons study has come out I don't ever want to stop IV-
I feel so bad for you. I'm going to look for another card to send you.
After I walk the dogs!
Hugs, Carol
Posted by AliG (Member # 9734) on :
quote:Originally posted by Cobweb:
I can't imagine having a line put in at home. I would so be a wreck.
I DO NOT recommend it, if it is posible to avoid.
quote:
so why was the other one pulled?
It seems the inflamation in my vein was blocking the infusion. My arm got very painful & it was getting progressively more irritated and harder to infuse with each IV. (Or maybe just to be cruel, not sure)
Thanks for the anti-clot info.
They just have me doing SASH in am (saline/ABX/saline/heparin) Then heparin flush in pm 7 days/wk.
Aspirin and actigall, sounds like your LLMD is on the ball!
I'm gonna have such a list when I go back to this ID!
Eww gross!!! I just noticed something. The reason why I keep feeling a pinch is because when I bend/straighten my arm the cath is sliding in & out. SHOULD IT BE DOING THAT?!!
I just finished reading something that said if it slides out, don't push back in, it could cause INFECTION!!!!
OK, relax, it's all sterile under there. It's probably happening because she left that little pool of alcohol there, which probably disolved the scab.
How'd your LLMD visit go? Well, I hope. Did you get permission for your infinite IV? Don't feel bad if you can't give me your pole. They sent me a portable one.
I can fold it up and telescope it higher & lower. It's nice & light so I can just drag it around with me. (I just found out that I can make it shorter to put on a tabletop or counter, while I was trying to find a way to get the bag up to the ceiling )
If you're going to be on much longer, maybe you can convince them to send you one, though yours is probably nicer. Mine reminds me of a coat tree, but lighter. It's kind of a neat toy. My DD has claimed it for a "microphone stand" when I'm done.
I can't believe they're selling it for $27 and some of these places are selling it for upwards of $250. Someone's getting ripped off for sure!
There was a guy on "craigslist" selling one for $15, but I know nothing about "craigslist".
Posted by Cobweb (Member # 10053) on :
AliG my picc is anchored with two stitches-one on each side of white plastic miniature airplane thingy. No sliding in and out. I don't think that's a good thing.
It's also anchored by the way it is taped. Wish I could send a picture.
Nurse cuts a piece of tape to measure about 1/2 inch wide and 4 inches long, she wraps it around the catheter tubing , sort of like the pink cancer ribbon, then runs a piece of tape across that so it's flat to my skin and secured.
Your catheter should be covered with a square bandage,too, where it enters your arm.
As far as my portable pole-materials cost less than 5 bucks at home depot.
Will post later about visit-IV for another month at least
Carol
Posted by AliG (Member # 9734) on :
It's got a "stat-lock" that keeps it from moving anywhere & the tegaderm bandage covers the whole thing.
Maybe the site is too close to the bend in my arm? It goes in my forearm just below the bend.
I don't care if I have to stop using my arm until this is over. SHE'S NOT PUTTING IN ANOTHER LINE!!!!!!!!....and she is not going to practice sewing on my arm!
Good job on the pole!
[ 19. October 2007, 07:25 AM: Message edited by: AliG ]
Posted by AliG (Member # 9734) on :
It seems to have scabbed over again & stopped the sliding.
Glad to know I'll have you with me for another month. It's nice to have company.
Have you just been going month-to-month as far as knowing how long on IV? I've been wondering if I'm going to go back & he'll say OK months up, you're through.
Posted by Cobweb (Member # 10053) on :
Actually I thought it would be pulled about three months ago.
We both agree that I've made about as much progress as I'm probably going to make on IV Rocephin.
However, on the heels of Dr. Fallon's study, and the fact that so many other antibiotics are out for me, she keeps extending it until we can figure out the next step.
So I continue the IV, add oral Rifampin,along with oral Silymarin(herbal) for liver support, and Echinacea(herbal) to help boost my WBC.
I have good insurance which has authorized 999 days of infusion (!),although I do have to pay deductable.
Later Gator, Cobby
Posted by Cobweb (Member # 10053) on :
Just remembered you are going to an ID. I'm going to an LLMD, sooooo chances are your doc will say "okay, times up" and pull it after a month.
Hope not!!!
Posted by Geneal (Member # 10375) on :
You brave ladies!!!
Not only surviving the woes of the IV, but able to laugh about it.
I could picture you Ms. Cobweb trying to catch the line with the blood coming out.
Oh the horror. Oh the humor!
Sending both of you "brave litle soldiers" positive thoughts and prayers.
Hugs,
Geneal
Posted by AliG (Member # 9734) on :
quote:Originally posted by Cobweb:
Just remembered you are going to an ID. I'm going to an LLMD, sooooo chances are your doc will say "okay, times up" and pull it after a month.
WHHAAAAAAAAAAAH!!!!!!! I just found myself wondering if I could take him down if he says that. I'm 5'4" and he's MUCH taller so it's not very likely. I also wouldn't be able to use my left arm.... I wonder if I could outrun any of them.............I'm doomed
After what I went through to get this thing put in, NOBODY'S PULLING IT!!!! They'll have to catch me and hold me still first!...........or I suppose cut off my heparin.....or jab me with a needle & sedate me
OK- once again trying optimism-
I don't know for sure he's NOT LL. I haven't talked to him enough to determine that yet. The cat had my tongue in his office.
I'll bet my regular LLMD sometimes wishes he had a cat in his office! You should see the looks I get from him sometimes.
I'm not sure whether he gets my humor or if maybe my humor is why I have this IV in my arm right now.
Last night, just before I had to go get DD from a "dance", I flushed my heparin. I did feel a little pinch up toward my shoulder, but just figured it was my body rebelling.
I glanced down at my arm as I went to throw a sweater on (don't want to scare all the little kiddies). There was blood on a couple of different spots on the wrap covering the dressing!
SOB!!!!!WHY?!WHERE?! I'm really getting sick of this crap! I unwrapped it & looked. OK, it was running down the outside of the tubing. I grabbed the alcohol swabs and cleaned up my arm & the tubing and traced it to coming from under the dressing. That can't be good, if blood can get out other stuff can get in!
I had to get my DD, so I figured (since nothing was "spurting" from anywhere) the call to the nurse could wait. I covered the whole mess with sterile gauze and taped rolled gauze with pressure over the site.
I called the nurse when I got home. No biggie, new line just put in 2 days ago. I forgot about going through all this dung with the first stupid line a week & a half ago. At least then the blood was staying under the dressing!
"Is it the size of a quarter?" How the flap should I know?! It's all over the stat-lock, some gauze, the wrap and some alcohol wipes. Maybe I can wring them out tell you!!!
(clarification for those who haven't done this yet: that is a total exageration if you can actually "wring" blood out of anything I don't think you should be out galavanting around and waiting to call the nurse )
When is this stupid IV gonna start helping?
Posted by AliG (Member # 9734) on :
Thanks for the love, Geneal! You're such a sweetie!!! Right back attcha with the prayers & healing thoughts.
How are the ladies? (I'm speaking in code here) I had another bout but it was pretty brief. The tofu didn't work for me but I couldn't find your thread to post. I guess I could have PMd you.
WORK IV! WORK ALREADY!!!!!!
Ali
Posted by AliG (Member # 9734) on :
I CAN'T CATCH A FREAKING BREAK!!!!!!!
I'm waiting for the nurse AGAIN!
I went to flush the saline. Did it flush? NOooooo! I got resistance & felt cold on my arm under the gauze that was covering the dressing from last night's escapade.
I unwrapped it & there's ANOTHER pool which proceeds to start running out of the bottom of the dressing!
Posted by Cobweb (Member # 10053) on :
OMG
You're putting a new spin on whatever can go wrong will go wrong.
At first when you mentioned the blood I was ready to post that some bleeding will occur with each new insertion.
Then I remembered the motto-if it's a dime it's fine, if it's a quarter make a call.
then things seem to deteriorate rather rapidly for you. DAMMMMMMMMMM
I have also felt a cooling sensation when flushing sometimes-never any problem, has to do with room temp of flush being cooler than body temp I think.
The pooling business is freaky. Glad the nurse is coming.
However-do not despair. It is possible they have to pull the tube-perhaps all the way out, perhaps only a couple centimeters.
Did you have a follow up xray???? for either insertion???
If they pull it-take a break in my opinion. Catch your breath. All is not lost.
Then when you are ready-insist it be done at hospital by a surgeon in Radiology with high tech watching every move.
As far as how long it will take for you to feel the effects of Rocephin-months.
Guess I'm going to have to send you another card.
Chin up, Chest out, Butt back, Forward March-just make sure there's nothing to trip over.
Carol
Posted by AliG (Member # 9734) on :
Nurse just left.
Ever have a line full of air bubble up into your shoulder?
I can't talk about it right now, I'm still too freaked out.
*********************
Ok- I'm back. I'm still freaked out.
I darn near scared the pants off the nurse too because she was standing there with her cell phone in hand, returning a call that had come in while she was adjusting the catheter & changing the dressing.
She had just started the infusion for me. I heard bubbling in my shoulder. My mind instantly flashed to hanging the bag earlier, and 1/2 filling the chamber, but NOT YET RUNNING THE AIR OUT OF THE LINE!!!!!
From there it immediately flashed to my original nurse's reassurance, as she slid her hand down the IV line, "it would take this entire line full of air to kill you".
I started yelling "AIR! AIR! BUBBLING! SHOULDER!" I grabbed the line & kinked it off like a garden hose. The nurse dropped the phone & set the clamp.
I told her "I never flushed the line, it was bubbling in my shoulder"! She told me I did flush it, I had to have or it wouldn't have gone in something about the weight of the liquid vs the air and physics.
I'm not usually sure of things but I KNOW I did not flush the air out of the line. Her telling me that I did also tells me that SHE didn't!
I guess I can stop being so paranoid about every little bubble now. It seems as though the entire length of tubing filled with air won't even kill ME.
I'm a super-freak, super-freak, I'm super-freaky, yeah!
They're coming to take me away, haha, heehee....
I'm still not buying that physics stuff. I'm pretty sure I cheated death. I'll bet she got out to her car & peed herself (or worse).
[ 20. October 2007, 01:27 PM: Message edited by: AliG ]
Posted by Cobweb (Member # 10053) on :
I've had air in the line-but nothing to the significance of causing a leak or backup.
So you just had to "burp" the line???
Did she pull back until blood came?
Don't blame you for the .
It's traumatic, emotionally exhausting.
Talk to you later. Hope you don't have nightmares.
Take Care, Carol
Posted by AliG (Member # 9734) on :
quote:Originally posted by AliG:
My mind instantly flashed to hanging the bag earlier, and 1/2 filling the chamber, but NOT YET RUNNING THE AIR OUT OF THE LINE!!!!!
I realized that my mind did not "instantly flash". I first wondered why my shoulder was sounding like it was about to have an explosive bout of diahrrea.
I think I've calmed down now. Posted by Cobweb (Member # 10053) on :
I thought of you today when I flushed the Heparin and was startled to hear a gurgling noise in my line.
Glad things have calmed down for you.
Posted by sometimesdilly (Member # 9982) on :
hi Ali, tzarina of sweetness: sent you an email... dilly
Posted by cjnelson (Member # 12928) on :
WOW!!!!!!!!
Cobby, thank you for steering me over to this. I read every bit of it.
Mixed bag of emotinos here for sure.
I didnt think I would say this, until reading this, but I think the PORT would be a good option! dont like idea of procedure BUT
with my vein history it seems the most viable option.
Sure dont know about insurance though...scared about that side of things for sure.
I ahve BC/BS of KY (although I am in TN). Any idea on them????
UGH! A road, huh...a long windy ride...kinda like squiggly veings Posted by Cobweb (Member # 10053) on :
quote:Originally posted by cjnelson: WOW!!!!!!!!
.Sure dont know about insurance though...scared about that side of things for sure.
I ahve BC/BS of KY (although I am in TN). Any idea on them????
UGH! A road, huh...a long windy ride...kinda like squiggly veings
I have blue/cross blue shield of Mass, and i live in Maryland-go figure.
Infusion company cleared it with insurance before getting involved. Insurance co apporved me for 999 days, as I guess you saw, and I paid nothing the first few months.
But then I forgot about the deductable which we pay at the beginning of each new fiscal year. So now I have a bill-of 500 to be paid off.
But I am getting the treatments, and can pay off the debt in monthly installments.
Ali seems to be having a bit of a different experience then I had-so that's the way it is with all treatments.
My experience has been a good one. I recommend it. Ali may have a different opinion.
In fact i'm worried now that she hasn't posted here in the last couple of days. YoooHoooo where are Yooooo?
My future dread are the bicillin shots. But by now I'm willing to give it a try. I am more afraid of relapse than I am a pain in the butt.
Good luck-hope this helps you be prepared for all scenerios if you give it a go.
Take Care, Carol
Posted by AliG (Member # 9734) on :
Here I am!!!
I had a good day & didn't want to jinx myself. The nurse who tried to hurt me to death was back again. She tried to take the blood for labs out of the line. No such luck.
She pulled & pulled on the syringe. Then pushed & pulled & pushed & pulled. The extension & syringe started bubbling with air. (She kept shoving that back & forth, of course ) Eventually she gave up & stuck the other arm.
I DIDN'T EVEN FEEL IT!!!! I was Soooooooo HAPPY!!!!! I really should have played the lottery because I think that's about as lucky as I can get.
Today's infusion took an hour and a half again. I'm afraid. That was after chasing my dog around the neighbor's farm for an hour because she jumped the fence AGAIN.
I would highly recommend having something other than the Midline. I"m thinking that there's not enough dilution at that point in the arm to avoid irritating the vein. (I DO have low blood pressure so that may be a factor)
I would also recommend AGAINST having your line put in at home. Especially if you have any parasthesias/nerve sensitivities in your hands or arms. It was cruelty beyond all comprehension for me.
I also recommend that, if you spike the bag & fill the chamber, you RUN THE AIR OUT OF THE LINE!!! Just in case you run into trouble with the saline flush and the nurse kindly "hooks you up" without checking it first.
Seriously - talk about your "cautionary tale". I can't imagine anyone else could possibly have had so much go wrong in their first two weeks. I REALLY hope that I am just an unfortunate exception.
Ali
Posted by Cobweb (Member # 10053) on :
Just a reminder- my doctor wrote specific orders that my picc was NOT to be used for blood draws. I have them done every two weeks-and it's always a needle stick in the other arm.
I was told blood draws from picc are not a good idea because of clots. (sure hope you read this in the morning and not just before bedtime!)
Nurse K thinks it's ridiculous because I have such a good line-nevertheless it was in the orders-NO BLOOD DRAWS from picc line.
Take Care, Carol
Posted by AliG (Member # 9734) on :
quote:Originally posted by Cobweb:
(sure hope you read this in the morning and not just before bedtime!)
SEE HOW UNLUCKY I AM!!
Thanks for the reminder. I do believe I now remember you having said that before.
I'm not gonna let her try again. (especially after that little bubble-making thing she was doing ) I'll just have to tough it out.
Now I lay me down to sleep......
Posted by AliG (Member # 9734) on :
I took 2 extra-strength Tylenol an hour before I infused this am & put heat on for about 20 minutes before, also.
The saline flush backwashed a bit with some blood out of the site again.
The infusion went well though.
The site looked like it might be getting a little bit pink & puffy, but I can't really tell because the Tegaderm bandage is all wrinkled up again. It gets hard to tell what I'm looking at when it scrunches up like that. I hope it's just my eyes.
I put a call in to the nurse, looks like another dressing change may be in order anyway and I'd rather be safe than sorry when it comes to an infection.
I REALLY WISH SHE'D WASH HER FREAKING HANDS!!!!! I don't believe that the santizer stuff is "just as good, if not better". I use it as a secondary precaution, AFTER I wash with the antimicrobial stuff.
I actually think I felt SAFER with the nurse who shot a line full of air in my shoulder. She washed her hands thoroughly and I doubt she'll EVER hook up another patient without checking the line.
I feel like I've been run over by a bus again. That's a good thing, right? I really need to go lie down for a bit before Nurse Assasin comes. Who knows what I could be in for today.
I just thought of something. I wonder if all the patients who had problems with the IV in the studies were actually patients of hers.... Posted by AliG (Member # 9734) on :
Hi Carol,
Here's my latest episode.
A new nurse came out this morning. Did she wash her hands? Noooooooooooo!
She walked with a cane, so I had a tough time asking her to get up and walk over to the sink.
There is truly something wrong with me. Why do I find it so hard to open my mouth and ask these nurses to practice sterile procedure? It just dumbfounds me that they go about their jobs this way.
I had to "bring" her the dressing change kit because she didn't "know where I keep my supplies". (Again I thought of the cane and refrained from saying "I don't mind telling you where they are")
While I was getting the supplies a tube of anti-bacterial hand lotion appeared on the table. I don't know if she actually used it because I didn't see her. I do know that they tell you not to apply "lotion" after the sanitizer because lotion can harbor bacteria.
She had 1/2 inch long nails manicured in dark rust, so I would have no idea what kind of stuff may have been lurking under them.
I'm quite sure it's people like me who make the "risk outweigh the benefit". My apologies to everyone. These nurses are going to kill me & it seems I'm going to let them.
I'm going to post a big sign in my kitchen that says "Cleanliness is next to Godliness, PLEASE WASH YOUR HANDS!!!" I mean REALLY a 15 second scrub, is that too much to ask?!
I just went and re-read the Hibicleanse they sent me. The 15 seconds is for personal use. (That's the same as the Dial Complete liquid antibacterial hand soap).
The surgical instructions actually say scrub 3 minutes with a brush, rinse thoroughly under running water & REPEAT! Now I can see why they don't bother. That's more than 6 minutes of hand washing! Way too much work. So why bother washing at all?
I wonder if the surgeons in the hospital just grab a squirt of anything that says anti-bacterial (if they get caught)& dive right in now. Maybe that's why hospitals have high rates of sepsis.
I think the reason the rates of infection are lower for home infusion than hospital infusion is because people who do their own infusions WASH THEIR HANDS! You only have nurse risk factor in once a week, unless you're a spaz like me.
Oh, almost forgot, no mask or gloves either and I think some of her dandruff may have fallen on my arm.
The good news is, when she got the dressing off & cleaned it with alcohol, it didn't look infected. (YET!!!!!! )
She's coming back Monday morning before my LL?ID appt. Somehow I think I'd feel safer taking my chances changing my own dressings. There's something definitely wrong with that.
She was a very nice person, though. I think being a pleasant nurse is equally important as it is to "look good" to an ID duck.
All of my nurses have been SO pleasant. I couldn't help but like them and they ARE GOING TO KILL ME!!!!
Enough about me, how are you today Carol? Posted by sometimesdilly (Member # 9982) on :
Ali-
it's your life.
please tell your nurse (EMPLOYEE) to wash her hands. enough already. yikes!
you don't need the worry, and maybe telling her will make a huge difference, if not not with you, then with someone else's life.
hugs, dilly
Posted by AliG (Member # 9734) on :
quote:Originally posted by sometimesdilly:
if not not with you, then with someone else's life.
You really know how to get to me, don't you. Yes! I can do this to save someone else!! Now I have to figure out what to say so they won't just wash their hands here, but EVERYWHERE!
I've missed you, BTW. Where have you been? I HAVE TO CHECK MY E-MAIL!!!!!! Ooops, So sorry Posted by Cobweb (Member # 10053) on :
Oh Ali- I'm so right there with you.
But I'd like to point out if the Nurse Cane can make it to your house-she can make it to the sink!
Also if you don't feel comfortable about asking her to wash her hands thoroughly-then blame it on yourself with something like:
"Humor me . I'm a nutcase in my fear of sepsis. And by the way,T-gel shampoo does wonders for dandruff."
Even I am getting scared for you Ali. I think you're right about why fewer home patients get sepsis than in patients.
My supplies, including dressing materials, are delivered every Friday afternoon-then nurse comes out on Monday for dressing change.
I'm doing okay with my picc line-but I don't want to say anything because I'm afraid I'll jinx myself.
I'm not liking this Rifampin (oral). I'm feeling sick again-or like I'm getting sick but never really do get sick. Sore throat, glands, neck, muscle aches, headache-low level,not sleeping well. Blah Blah Blah
Mentally I feel like my head is clear-physically I feel like crap. So there you have it.
We keep dialoging - I often wonder how many other current IV Leagueres are reading and can identify?
Hope we didn't scare anyone away. I want to frame my picc when I'm through.
Take Care, Carol
Posted by Carol in PA (Member # 5338) on :
Ali, Maybe you could set up your supplies on the kitchen table for the nurse's next visit.
Then it wouldn't be so difficult for her to wash her hands before she begins working with the dressing.
"I'm really nervous about contamination. Would you be able to wash your hands first?"
Heh, when my son was to get a booster shot for tetanus, I asked the physician to please scrub the injection site with the alcohol swab. (They usually just wipe the site with the swab.)
I have found that scrubbing the site with the swab seems to reduce the pain of the injection. (I explained that to the doctor.)
I was practically telling the doctor what to do, but my son was kind of nervous about the injection, and I didn't want him to go through unnecessary pain.
The doc was good natured about it, and followed my instructions. Right away, my son told him that it hadn't hurt.
Okay, so I'm bossy. But you can be that way when you know that you're right.
Carol
Posted by Cobweb (Member # 10053) on :
From C in PA -"Okay, so I'm bossy. But you can be that way when you know that you're right." I love it.
For C in PA BTW- I have added:
1. Rifampin to my schedule-I take it on empty stomach first thing in AM with other meds I take "upon wakening"
2. Silymarin (Milk thistle) for liver support which I take 3 X a day with meals.
3. Echinacea 3 x daily which I take with meals,too. LLMD wants me to take this to see if it will help bring my WBC back up .
I think of you every time I consult my chart. I have little snack pack glad ware containers-it feels like I'm playing that pebble game.
Take Care, Carol
Posted by AliG (Member # 9734) on :
Wow Cobby-
It sounds like adding the Rifampin is a good thing! I'm sorry (and glad) you're feeling like poop. It really stinks that we have to feel worse to get better.
How long were you on the IV Rocephin before you added it? (Too lazy to figure it out & sure you'll know off the top of your head. )
I also saw that you added a few more tasty morsels to your incredibly long med list. How the heck do you fit any food in?(or are you just adding condiments at this point )
I would say that it sounds like you're doing a really good job of fighting the fight, but I don't want to jinx you either.
About the handwashing.....
Thanks Dilly, Carol & Carol for your suggestions. CPA, the brisk alcohol site scrub is a goodie for me too! ((big grin))
I have found that there's no way for a nurse to avoid sanitizer gel placed directly in front of them, between them & your supplies.
I have also found that they seem to love the CVS brand Lavender & Chamomile sanitizer. I found this in the diaper aisle, after looking through all the bandaging and cold remedy aisles.
I think if you mention that you have Babesiosis & your nurse goes "Huh? WHAT'S THAT?!". You can pretty well count on those gloves going on any time she's near your blood. (maniacal laugh)
I checked with the doctor and found some studies on handwashing vs sanitizer (aka-alcohol rubs). The concensus seems to be that it IS as good. Phewwww! I forgot to ask about the face mask, but will ask today when I go to the hospital to have a PICC put in.
I guess my body failed Midline 101. The nurse changed the dressing on Saturday (after I had another flush-back Friday night & trouble infusing AGAIN in the AM). She decided to call someone before leaving & they told her to yank the line.
Good new is I had a really good unencumbered shower Sunday morning. She came in the afternoon to stick me with a peripheral to hold me until I got to see the doc.
Dr. said another month of ABX and told me I shouldn't have these problems with a PICC. I may have some mechanical Phlebitis from the catheter itself, but hopefully it shouldn't be as bad.
I'd say there is a good bet that I will because I was actually able to feel irritation all the way up my vein, through the catheter, when the flushes went up. Either that or it's just my darn sensitive nerves.
I called the hospital to schedule and guess what. Their radiologists don't take my insurance (Aetna HMO) so if I go there I have to pay OOP. Is there nothing I can do easily?!
Drs office worked with me to find a closer hospital that would accept his orders that would also have covered radiologists, without me having to go play around w/my PCP for a referral.
Now I have to wait for the radiology scheduling to call me and AGAIN I have blood all over my arm. I don't know if I should yank it or make the nurse come out because I have no idea if I'm looking at any time before tomorrow morning's infusion.
Is my life a joke or what?!!!!!
Oh and hubby called me while I was in the waiting room at the Dr's office to ask what he should do about the tick on his arm , but that probably belongs in another thread. Sheeesh!
Aren't you feeling pretty good about your IV experience about now, Carol? If you are, then there is some good that has come from my hellish nightmare of continual catastrophies, I can at least smile about that.
Ali
Posted by Cobweb (Member # 10053) on :
Perhaps we should retitle this thread "The Ying and Yang of PICC."
My gosh AliG-it is distressing to read of all the difficulties you are having.
I want to tell you that I am in the process of moving-so I do not have as much time to exchange information.
I am so looking forward to telling the infusion company that my next supply order is to be delivered to a NEW address.
I notified the currior who brings my supplies and he said he would welcome the change-as he really doesn't like delivering to my current address.
Hopefully the disruption in internet service is only a minor glitch once I unplug the computer and haul it to new place.
Keep up the good fight yourself. Carol
Posted by AliG (Member # 9734) on :
Congratulations on the move!
I hope it all goes smoothly and easily. I'm really glad that things are getting better for you!
My PICC is in place. It only took 1 hr and 10 minutes. (she said sarcastically) It was supposed to take around a half hour.
The radiologist said "it looks like you have a sensitive vein". I had told several people about my stupid veins, I guess the word didn't get to him.
I had to laugh. I told him "It would seem that ALL my veins are sensitive. I think that's why I'm here.".
I won't bore you with all the little details. It's in & I'm still alive, so it could have been worse.
The infusion company just informed me that the orders they got from Dr. were only to extend for two weeks (not the month I had been told).
All I can say is, if I just went through the ordeal of having this PICC placed for two weeks of infusions, I'll be heading up there to do a PICC placement of my own! (& he won't like my choice of insertion sites )
I'm sure probably has to do with getting through my insurance or something. I wasn't under the impresssion that he was planning to stop soon. I should be able to find out what's going on Monday.
I'm sending up a prayer for a smooth move. I hope all goes well.
Ali
Posted by AliG (Member # 9734) on :
This morning my dog came bounding into my room & up onto the bed. Of course she landed her paw right on the insertion sight.
It hurt quite a bit. I checked it out and I don't think any real damage was done. There was a little blood coming from the site & a little bit from one of the stitches, not really much at all.
My flush and infusion seemed uneventful so I'm guessing no serious harm was done.
I don't want to call the nurse that's covering because my regular nurse is supposed to be coming back tomorrow, I believe.
As long as I can get her to use the sanitizer, I'm golden because she covers all the other bases.
The covering nurse came out to do the 24 hr dressing change. She took a squirt & put one glove on. (better than none) Then she took the glove off and started picking at the stat-lock with her long darkly polished nail.
She told me that if she breaks a nail I'm in trouble. I think that's pretty funny. Don't you think that's pretty funny? I wanted to smack her in the head with the glove and then throw up on her.
If only there was a way to see it coming & stop it before it happens. Once she has her bare nails in there, the sterility's been compromised, so what's the difference at that point?
I also just found out that they're not sending the labs to Quest so my insurance isn't covering them. Yet another call for tomorrow.
I hope the move is going well, Carol. Posted by AliG (Member # 9734) on :
Did you ever roll onto the shoulder of your PICCed arm & get fluttering in your chest?
I woke up one morning with the fluttering & a dry cough. I don't know if I had been on that shoulder, but it scared the bejeepers out of me.
I went to go to sleep the other night and, without thinking, rolled onto the PICCed shoulder. The fluttering started again. I immediately rolled off and it stopped. What's that about??? Should that be happening?
I've also been having a feeling of pressure in the center of my chest, but I think that started before the IV (not certain). The coughing seems to be continuing today. I think the pressure seems to be relieved somewhat by lying down with a heat pack on my chest. I'm not sure which one is helping or if it's the combo.
The feeling in my chest could just be from all the coughing, I suppose. Posted by Cobweb (Member # 10053) on :
It is finished.
My picc line has been pulled-but not without putting up a fight.
OMG-it looked like Nurse K was playing tug of war with it, she was pulling on it so hard it got taut.
I just about fainted I was so freaked. I thought those things just slid out easy. Somehow this one was attached.
Finally there was an audible POP when it released and out it came-fibrin sheath and all.
No blood-I expected a geyser, but there wasn't even a trickle.
Look for my handy dandy portable pvc pole for sale on ebay!
Ali- I still want to keep close tabs on how you are doing-so keep me posted.
I have now earned a PHD(that's a Poopy Head Degree in honor of our dear Cave) from an IV league School of Hard Knocks.
That's All for Now Folks, Carol Cobweb
Posted by AliG (Member # 9734) on :
HOORAY!!!!
Congratulations on your graduation!!!!! (PhD , I miss Cavey )
Thanks for the warning on the Tug & Pop, that would freak me out too.
8 whole months - you're my inspiration. I'm glad you're doing better. What's next? Bicillin inj? I don't believe that I could survive that.
Though I guess it can't be as bad as the catheter placements, so maybe now I could. Who knows??
Did that fibrin sheath look like a long string of dark bloody slime? If so, that may have been what was messing up my midlines.
I really hope someday I can graduate & be a Poopy-head just like you! Though, when it comes to being a Poopy-head, there's a test I should have no trouble passing. Posted by Cobweb (Member # 10053) on :
I took a shower for the first time in 8 months!
I mean a REAL shower. Lathered up , scrubbed with a Loufah Sponge from my neck all the way down to my toes. Even used Conditioner on my hair. Wonderful.
No more "quickies" in the shower. Or holding onto the shower rod to keep my left arm out of the way.
No more scheduling time for infusions. No more excuse to do nothing but sit at the computer. But who really needs an excuse-how about it's raining out?
LLMD is continuing me on oral Omnicef and Rifampin. Every time she brought up Bicillin shots I made horrible faces grimacing. I am such a chicken.
As for the fibrin sheath-Nurse K quickly hid the evidence in the sharps' container while I regained my composure. I have discarded my fantasy of framing the picc line,too.
So now I am a free woman!
I miss Cavey,too. Hope she knows I made it!
Cobby
Posted by AliG (Member # 9734) on :
I AM SO JEALOUS OF THAT SHOWER!!!!!!!
The nurse had given me a day's break back in between pulling the midline & placing the peripheral & you know that's were I was! Scrubbing & lathering & scrubbing, I still remember how glorious it felt.
I sure hope I don't have to wait another 6 months to do that again.
Man I want a good shower! (you can't see me, but I'm stomping my feet )
The nurse got that midline she yanked concealed pretty fast too, that's why I'm not really sure what I saw, but I have my suspicions.
Oh fooey!! NURSE AT 2:00!!! Look at the time - Gotta Go!
SO JEALOUS!!!!!!!, but good for you!! Posted by beckyM (Member # 13944) on :
Ok Ali...took me awhile...eyes kept going in and out...and I went from points of laughing to being just absolutly disgusted by teh poor practices of nurses out there...oh my god!!!
I couldnt even get a picture of a nurse wearing fake nails trying to pick of your stat lock without gloves! We are not even allowed to (and I would never because of infection) wear fake nails!!! And as for touching you without gloves...I cant even go there!!!
And to be honest...the antibacterial stuff has been proven to be jsut as good...that being said...I ALWAYS WASH my hands, and I do it while the patient is watching...and...THEN I USE THE ANTIBIOTIC stuff...maybe I am over protctive...maybe just crazy...HAHAHA
I am so sorry you guys have all had to go through such nightmares...ughh!!!
Posted by AliG (Member # 9734) on :
quote:Originally posted by beckyM:
And to be honest...the antibacterial stuff has been proven to be jsut as good...that being said...I ALWAYS WASH my hands, and I do it while the patient is watching...and...THEN I USE THE ANTIBIOTIC stuff...maybe I am over protctive...maybe just crazy...HAHAHA
Would you be my nurse, PLEASE ?!
The fingernails were hers,(I think) just long. I don't know whether they were wrapped or just polished. Posted by beckyM (Member # 13944) on :
I'm there! I'll help with the IV stuff and you can educate me on the Lyme stuff...Deal? Posted by AliG (Member # 9734) on :
DEAL!
Please feel free to PM me if I don't always catch your posts.
Thanks for all your help!
Posted by Cobweb (Member # 10053) on :
"Fact or Crap" ?
I had moved into my new apartment by the time Nurse K came to remove my picc line.
Being conscientious I bought some antibacterial soap just for her to use for the finale.
I followed her into the bathroom for the handwashing ceremony.
She bypassed the soap for a quick rinse under cold water. I pointed out the soap and told her I had bought it just for her.
"you don't need soap" she answered," you really just need friction" Fact or Crap?????
Cobby
Posted by beckyM (Member # 13944) on :
CRAP!!! You can tell her that the CDC recommends washing hands with SOAP and water for atleast 20 seconds to avoid the spread of germs!!!
And then, I would be curious how many of your nurses are using paper towels to turn the faucet off after she washes her hands...becuase she turned that faucet on with her dirty hands...right?
So, whatever was on her hands before washing is now on the faucet...so if she uses her clean hands to turn it off...her hands are now dirty again!!!
CDC does recommend alcohol based hand cleansers also but they must be applied and rubbed all over hands and through fingers until dry...
Does this help??? If your lovely home health nurse doesnt believe in soap...print it out from the CDC and nicely hand it to her...hahahaha
Becky
Posted by AliG (Member # 9734) on :
Carol,
Were you making fun of me?
Please tell me she didn't really say that!
Thanks Becky!
This is for the IV newbies, so they don't have to repeat my experience:
Improved adherence to hand hygiene (i.e. hand washing or use of alcohol-based hand rubs) has been shown to terminate outbreaks in health care facilities, to reduce transmission of antimicrobial resistant organisms (e.g. methicillin resistant staphylococcus aureus) and reduce overall infection rates.
CDC is releasing guidelines to improve adherence to hand hygiene in health care settings. In addition to traditional handwashing with soap and water, CDC is recommending the use of alcohol-based handrubs by health care personnel for patient care because they address some of the obstacles that health care professionals face when taking care of patients.
Handwashing with soap and water remains a sensible strategy for hand hygiene in non-health care settings and is recommended by CDC and other experts.
When health care personnel's hands are visibly soiled, they should wash with soap and water.
The use of gloves does not eliminate the need for hand hygiene. Likewise, the use of hand hygiene does not eliminate the need for gloves. Gloves reduce hand contamination by 70 percent to 80 percent, prevent cross-contamination and protect patients and health care personnel from infection. Handrubs should be used before and after each patient just as gloves should be changed before and after each patient.
When using an alcohol-based handrub, apply product to palm of one hand and rub hands together, covering all surfaces of hands and fingers, until hands are dry. Note that the volume needed to reduce the number of bacteria on hands varies by product.
Alcohol-based handrubs significantly reduce the number of microorganisms on skin, are fast acting and cause less skin irritation.
Health care personnel should avoid wearing artificial nails and keep natural nails less than one quarter of an inch long if they care for patients at high risk of acquiring infections (e.g. Patients in intensive care units or in transplant units
When evaluating hand hygiene products for potential use in health care facilities, administrators or product selection committees should consider the relative efficacy of antiseptic agents against various pathogens and the acceptability of hand hygiene products by personnel. Characteristics of a product that can affect acceptance and therefore usage include its smell, consistency, color and the effect of dryness on hands.
As part of these recommendations, CDC is asking health care facilities to develop and implement a system for measuring improvements in adherence to these hand hygiene recommendations. Some of the suggested performance indicators include: periodic monitoring of hand hygiene adherence and providing feedback to personnel regarding their performance, monitoring the volume of alcohol-based handrub used/1000 patient days, monitoring adherence to policies dealing with wearing artificial nails and focused assessment of the adequacy of health care personnel hand hygiene when outbreaks of infection occur.
Allergic contact dermatitis due to alcohol hand rubs is very uncommon. However, with increasing use of such products by health care personnel, it is likely that true allergic reactions to such products will occasionally be encountered.
Alcohol-based hand rubs take less time to use than traditional hand washing. In an eight-hour shift, an estimated one hour of an ICU nurse's time will be saved by using an alcohol-based handrub.
These guidelines should not be construed to legalize product claims that are not allowed by an FDA product approval by FDA's Over-the-Counter Drug Review. The recommendations are not intended to apply to consumer use of the products discussed. # # #
CDC protects people's health and safety by preventing and controlling diseases and injuries; enhances health decisions by providing credible information on critical health issues; and promotes healthy living through strong partnerships with local, national, and international organizations.
[ 06-02-2013, 09:47 AM: Message edited by: AliG ]
Posted by beckyM (Member # 13944) on :
I love it...I think that is a great idea AliG!!! Everyone with a home health nurse should do that!!!! Thanks for posting the link!!
Posted by AliG (Member # 9734) on :
To give credit where credit is due- I could not have done it without you!
Just think of how many lives you might be saving, just by mentioning the CDC site.
Now all we have to do is find a way to get all the IV newbies to read this incredibly long thread.
Maybe treepatrol can stick it in the newbie links thread? Or Betty in the newbie package? How do we save the IV newbies?
I know! Maybe we can put it in it's own thread & keep it visible on the board for those intimidated by the length of this!
I have another question for you, if you don't mind.
I know that the nurse should be wearing a mask when she changes the dressing, to avoid breathing germs onto the site.
Does it matter if you talk over your undressed wound, with your own germs?
Posted by Cobweb (Member # 10053) on :
AliG- no way was I making fun of you.
In fact, when she said "friction is all you need" , I thought "oh brother, wait until my cohorts hear this one"
and then I had visions of grabbing my hard loufa sponge and applying a bit of real friction to her hands.
And I think that's a great question about whether the patient themselves should wear a mask for a sterile procedure.
Nurse K declined using my bar soap saying it had my cooties on it , which were okay for me, but not for her.
So that's another Fact or Crap question- Does bar soap harbor the cooties of the last person who used it?
Meanwhile, I am feeling like I won the lottery for surviving my eight months of IV-which didn't seem nearly as harrowing as your experiences so far.
Cavey thought I was using "poetic licensing" with some of the things I reported- but I assured her, or rather I should say, unnerved her ,by confirming I speak the truth.
And thanks for dragging that CDC report to the thread. I plan to print it for any further escapades with home health agencies.
I have a set of scars on my inner arm at the site that looks like a constellation. I think I should name it. Looks like Orion's belt buckle.
Cobby
Posted by beckyM (Member # 13944) on :
Bars of soap...actaully they can harbor germs. Think of it this way, have you ever seen a bar of soap that has been used by someone whose hands are really dirty? The bar of soap looks gross when they are done!
That being said...every Home Health Nurse should have there OWN bottle of soap in their bag!!! I even had my own papertowels!!!
Strong suggestion, buy the antibacterial pump soap.
Just looking out for all of your best interest!!!
Becky Posted by beckyM (Member # 13944) on :
AliG,
Ooops, I missed your question when I replied above...so, here is your answer...
Once the nurse is doing the sterile dressing, you SHOULD NOT BE TALKING OVER THE SITE! Even if it is your germs. You should be looking in the other directions!
If you want to see what she is doing, put a mask on. That way, you are protecting yourself.
The chances are probably slim to none that anything would ever happen from your own germs from what I understand...however, I wouldnt take that chance!
Posted by Cobweb (Member # 10053) on :
"Strong suggestion, buy the antibacterial pump soap. " This is exactly what I did when she shunned my bar soap-and then she shunned that,too.
I did provide a roll of papertowels in the bathroom. 1 point for me! Posted by beckyM (Member # 13944) on :
She shunned the pump soap??? Where did she get her nursing lic? On teh back of a cracker jack box? LOL!!!
one point for Cob zero for the nurse
Looks like your ahead!!! HAHAHAHA
Posted by Cobweb (Member # 10053) on :
"She shunned the pump soap??? "
Yeah- that's when she said you really just need friction to remove the germs!
You know-I never did ask to see her license. Posted by AliG (Member # 9734) on :
Thanks Becky!
I was keeping my head the other way & holding my breath when I'd turn to look. I was actually wondering if I was being unnecessarily paranoid.
I just read a thread in medical where nobody felt much pain with the PICC insertion. TWO KIDS had kitchen table midlines put in without much pain to speak of!!!!!!
WHAT ON EARTH IS WRONG WITH ME?! I darn near died from the pain with my midlines & my PICC insertion hurt as well, no where near the midline, but still.
Is it because I have parasthesias in my hand? Are my nerves more sensitive?
I think I'm going to tell the LLMD that he can't stop the IV until he can stick me with a cath insertion needle without me needing to scream.
Becky,
Do you know why it would have hurt ME so much worse than other people? I ALMOST PASSED OUT FROM THE PAIN!! I wasn't taking dramatic license, I really did.
The Midline was worse than unmedicated childbirth with artificially intensified contractions!
I didn't want to post this in that poor kid's thread because apparently there's something REALLY wrong with me. I'm just gonna pray that whatever's wrong with me isn't wrong with him too.
I think I really have to ask the Dr. about this. Posted by beckyM (Member # 13944) on :
Hey AliG,
Hmmmm...I can't say for sure, I can only take a guess as to why yours hurt so much...
If you have parathesias then you obviously have nerve involvement. The nerves in your arms and going up to your spinal cord are already at a disadvantage.
The only GUESS, and it is just that, a guess, is that you have such a large amount of nerve involvment from the Lyme that your sympathetic nervous system (your fight or flight) is "OVERSTIMULATING" itself in an attempt to protect you.
I would def. ask your doctor, if anything, jsut to see what his opinion is on this...
Becky
Posted by AliG (Member # 9734) on :
Thanks Becky
I wonder if I AM the only one who's had this type of experience or if others who've had parasthesias experienced the same type of pain response.
I think I'll post a thread to ask.
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by beckyM: Bars of soap...actaully they can harbor germs. Becky
I will never look at a bar of soap the same way again!
Ali- I have experienced Paresthesia in the past. I say in the past because that's when it was most predominant-from the top of my head down to my feet-flooded with very strong tingling sensations.
During a med reaction once medics took me to ER because they thought I might be having a transient stroke.
Now I would liken my paresthesia to a "sprinkling of tingles" localized -usually my legs.
The only part of my picc insertion that hurt was the shot to numb the area.
I do not think it effects my reaction to pain. I will repost this if you do run a poll.
Cobby
Posted by beckyM (Member # 13944) on :
Oh...and AliG...I forgot to tell you...YOU DONT NEED TO "HOLD YOUR BREATH" shen she changes your dressing...
I have visions of you turning blue and passing out just so you dont get germs on your insertion site... Just look the other way... Posted by AliG (Member # 9734) on :
ROFLMAO!
Thanks a lot Becky!!!!
Give me a little credit!
I would only hold it when I felt the need to see what was going on, then I would turn away & BREATHE!!!!
If I didn't look, I wouldn't have known that she was picking at the statlock with her fingernails! Posted by AliG (Member # 9734) on :
alright, I may have come close to turning blue once. Posted by Cobweb (Member # 10053) on :
I don't even look for a simple blood draw!
After watching about half an hour of videos from the other thread posted by MysteryGirl, I sure am glad I was already horizontal when they inserted the picc line.
I am well practiced in counting ceiling tiles. And I always thank the few techs who take the time to tape up interesting pictures.
Sometimes I watch the Nurse's face to get a feel for whether the procedure is going well, or hitting a few snag.
As was the case literally when my picc was removed. I could tell by the expression on her face, and the grunting , that this was not going according to plan.
Hence I took a quick look-now I need a few more sessions for PTSD. Maybe if I hadn't seen the movie Aliens I wouldn't have gotten so freaked.
Later-kid says she needs computer for homework-yeah right! Better believe I'll be a POS.
Cobby
Posted by AliG (Member # 9734) on :
I just wanted to mention that I believe the rash that started under my dressing/statlock had something to do with fungus, probably caused by moisture that built up there while washing the Thanksgiving dishes.
After trying all kinds of things to heal the stupid rash & stop it from spreading, I finally was able to get it under control with Desitin ointment. The area outside the present dressing, of course.
It had started improving about 5 days in on Diflucan. Then about 3-4 days after the Rx ran out, it started getting worse again. It has continued to spread & worsen under the dressing.
Fungus is the only thing I can think of that would have caused it to spread to the previous midline statlock area and get as bad as it did there. I had noticed a couple of tiny red spots there, so after I had put neosporin on the rest of the rash, I rubbed some there too.
That probably spread spores, held them on the skin, and kept the area moist allowing them to get a foothold there too.
I'm just posting this in the hope that nobody else should repeat my stupidity and to offer up Desitin as a solution if they do. Posted by Cobweb (Member # 10053) on :
Are your dressings changed once a week?
Hope you're not planning to wash the Christmas dishes,too. I used paper plates for Thanksgiving. Some might call it tacky-I called it practical.
Anybody who complains about paper plates for Christmas can do the dishes.
I have been meaning to pass on another tidbit-I have quite a collection of cutoff sock cuffs-so I started to wear them as "palm protectors" when I am on the computer.
Since they don't make fur lined mouse pads the sock cuff acts as a buffer. The palm of my hand still gets red, but it does not feel so tender or irritated.
Posted by AliG (Member # 9734) on :
quote:Originally posted by Cobweb: Are your dressings changed once a week?
Yes, but that's all over now. I'm getting yanked on Tuesday.
Thanksgiving was always my big holiday. I couldn't even attempt it last year & this year was out too. My MIL had it at her house and, since she would usually help me with the dishes, I felt sort of obliged to reciprocate.
I know how much I appreciate the help when I spend a good week prepping & a couple of days cooking. It was just the right stupid thing to do.
That's a good idea with the sock cuffs. I'm glad to know I'll still have a use for them after Tuesday.
I'm so afraid that I'm going to sink back into my Lymed-stupidity after only 10 weeks of ceftriaxone, but I guess I just have to hope for the best.
This has not been fun for me and I'll be really glad when it's over. I can't even think about the possibility of ever having to repeat it right now.
How's everything been going with you?
Posted by Cobweb (Member # 10053) on :
I'm continuing on oral Omnicef-in the same family as Rocephin. I really got depressed when Fallon's study came out because I was afraid I would get lost in La La LymeLand again.
Whether it's the placebo effect, or true effect I see Omnicef as a safety net. Fallon's study did not include any follow up on orals. So I hope this is the difference between marching forward or sliding backwards.
I am continuing to feel better and more myself. I'm sorry you were not able to continue on the Rocephin longer. But that doesn't mean things won't continue to improve for you,too.
Keep the Faith Baby, Carol
Posted by AliG (Member # 9734) on :
So I guess the oral Omnicef might not be such a bad thing. I had taken oral Cefixime, a couple of ABX before the ceftriaxone, & it was pretty much useless. I do hope the Omnicef will work better for me.
I thought you were doing Bicillin shots. Did you finish that or weasel out of it?
Posted by Cobweb (Member # 10053) on :
Taking the path of least resistance-much easier to pop a pill in my mouth than jab a needle in my butt-ox.
So- did you get your picc pulled?? Did I miss the update somewhere else?
Carol
Posted by AliG (Member # 9734) on :
OOOOOOOOOOOPS!!!!!
Sorry about that. It was yanked the Tuesday before Christmas. I'm pretty sure I posted it somewhere. Where? I have NO clue. I guess the Omnicef isn't working quite as well for me.
Since last Thursday, I've been having quite a bit of pain (neck, shoulders, back, & just above knees), headaches too (come & go). I'm not sure what the heck it means. Is it a drug side effect, some co-infection or the yeast again???
I think it's too fast to be the Bb. The yeast could be a factor, but the Rocephin sure wouldn't have been holding that back.
Side effect or co-infection, care to place a bet? I go back to "LLIDMD" 1/3. I'm debating on whether to call & give him the "heads up" before hand, so he's not thinking I'm all "honky dory".
The insurance company sent me a letter, which I opened the evening before Christmas Eve. They're refusing to cover the IV. They say I needed to get a pre-certification(?)(or some such crap) from my PCP, PRIOR to the IV & that it needed to show that it was of "Life-threatening" necessity.
Did I mention that I was 12 hour late with a dose BECAUSE THEY HAD TO GET THE INSURANCE APPROVAL before they would send the meds?!!!!!! The delay in GETTING STARTED was because THEY HAD TO GET THE INSURANCE APPROVAL!!!!!!!!!
why???.....
Ali
PS- I hope you had the loveliest of holidays! Posted by Cobweb (Member # 10053) on :
Ali- I am sorry to hear of your on going struggles with this whole process.
Fortunately I got my authorization in writing-good ole hard copy black and white.
I do not remember the pain you mention when stopping Rocephin.
The Omnicef doesn't give me a headache per say- but it does feel like the inside of my skull is sunburned. Now only a lymie could understand that sensation.
Supposedly the brain itself does not feel pain-but something in our heads sure does get fired up. Anyway- I suspect it is a side effect of the drug, but I try to tell myself it is the ketes getting fried.
We had a simple Christmas-the more laid back the better I say. I absolutely did not should on myself this season.But I did use real dishes for dinner, as opposed to the paper plates I used at Thanksgiving.
And I plan for a quiet New Year. Me and my recliner and my little dog, Ash.
Cobby
Posted by AliG (Member # 9734) on :
Calling all Cobwebs!!!!!!
I hope you & Ash had a great New Year celebration. Where have you gone?? We're worrying about you.
Posted by AliG (Member # 9734) on :
The letter was not refusing to pay for the infusions, just for the labwork from the Home Care Company. I misunderstood the letters
They paid that too(when I finally called ) and didn't give me a problem, because I had no say where the blood was sent.
GOOD NEWS!!!
Ali
[ 09. May 2008, 08:58 AM: Message edited by: AliG ]
Posted by Cobweb (Member # 10053) on :
Hey AliG-boy was I surprised to see this thread resurrected-glad it's not my Resurrection-I'm not ready.
I'm hanging here and there-but not around IV poles or anything like that.
I was actually off treatment for two months-and then what should appear to my disbelieving eyes,
but a nasty ole tick stuck deep in my thighs.
Actually not my thighs-it just rhymed with eyes.
It was embedded in my stomach to the extent it had to be carved out in the ER. ACK Infected , inflammed, painful, with streaks spreading out from it-very traumatic.
Back on oral Doxy for 6 weeks, which bummed me to no end. But I am feeling better-actually dealing with "other issues"
Such as grief.
Sunday, Mother's Day, May 11th, Barbie's Birthday, and the day of her Memorial Service 4 years ago.
Like all the planets lined up-the alignment of gravity pulling me into an overwhelming sorrow.
I think a part of me saw it coming, but it didn't all come together until a few days ago. I'm glad I finally glimpsed the trajectory of the sucker punch- not so I could avoid it-but so I could turn to face it head on.
I spent the day making a CD of the music we sang at her service. I have been listening to it over and over.
Sometimes when one is trying to deal with the death of a child-little else matters-not even lyme disease.
So there you have it! Thanks for asking, friend.
As for me and my house, we will serve the Lord. Carol
Posted by lymemomtooo (Member # 5396) on :
Hey Webster my friend. Missed your smiling face last night at the support meeting. We had 47 counting the committee. A good attendance considering the weather..
Hope you get thru this weekend ok, along with the next couple of weeks. Hugs lmt
Posted by Cobweb (Member # 10053) on :
Hey Godzilla Tick! I was at a Compassionate Friends meeting , for bereaved parents. Sheesh, I feel like I'm beating a dead horse here-oooo bad choice of words.
I was aware of the conflict for a while-but I'll be darned if I can respond to anything until it is right in front of me and by then it's usually too late. Sorry I didn't let you know.
Here's my smiling face for you. Posted by AliG (Member # 9734) on :
OH CR@P CAROL!!!!!
How many times do I have to tell you not to bellycrawl through the grass!!!!!!
I can not even tell you how sorry I am to read this post.
Not only do you deal with these stupid-arsed TBDs, you are trying to cope with every good mother's worst nightmare.
I am SO sorry that this is all converging on you at the same time. How awful.
I realize that there is likely nothing anyone can say to lessen your pain, only to tell you that we love you and are here for you if you need us. I wish I could give you a big hug.
You are such a good-hearted person. I often wonder whether people with good hearts would have the same compassion & empathy for others, if they had never known pain & suffering in their own lives. I think it is the emotional pain that makes us able to feel for others who suffer.
I have been told, and I choose to believe, that we agree to accept the course of our lives before our souls descend into our bodies and our life begins on earth. We choose to accept whatever tragedies occur so that others may learn from or be tested by their interaction with us.
I think much of it has to do with patience, kindness, compassion, empathy and the opportunities we have to reach out to each other or turn a deaf ear.
You will be with your daughter again when it is time. Her "contract" was just fulfilled sooner than yours and when you have served your purpose here on earth, for the agreement that you made, you will join her.
I know it stinks but you still have work to do and people like me still need you. When you are done you will live on in peace and joy with all of your loved ones.
Know that there are a great many people who love you. Some whom you've never even met are bettered by your existence and are thankful to God for sharing you with us.
This may sound like a bunch of drivel, but just know that I am very thankful to be able to consider you my friend and I do love you.
I never would have made it through IV without you! (or a lot of other things too ) Thanks for always being there for me and if you need someone to talk to, yell at, cry to, PM me & I'll give you my number.
I'll even promise to try my hardest to resist the urge to interrupt you (so I don't forget thoughts) and try not to go off on strange tangents (attention span of a gnat right now). I'll try especially hard to follow the conversation (neuro-cognitive & concentration problems).
For you, my dear, I would pray that God would give me the ability to be there, should you need me. I also pray that God gives you the strength you need to carry you through this trying time.
hugs & prayers, Ali
Posted by Cobweb (Member # 10053) on :
This is kind of fun-highjacking our own thread!
You said "Her "contract" was just fulfilled sooner than yours and when you have served your purpose here on earth, for the agreement that you made, you will join her."
I had a "near miss" experience the other day, walking back to my apartment with my little dog Ash .(BTW- I can't remember what I did on New Year's Eve-and it wasn't because I drank too much)
We were walking on the sidewalk by the parking lot. Just me and my dog. A couple got in their car , but instead of backing out of the parking slot, the car lunged forward-just as we passed in front of it!
The bumper of the car scraped over the cement berm, then the wheels hit it and came to a sudden stop-a foot from me.
They were extremely apologetic, and I was extremely close to fainting it scared me so bad.
But alas, after getting over the shock of coming so close to getting run over-but NOT getting run over- I came to the conclusion God was trying to reinforce the message that my time is not up yet.
Barbie more than fulfilled her contract. Guess I still have some work to do on mine. It was a privilege and a blessing to be her mother.
No bellycrawling through the grass? But I tucked my pants into my socks. And I wore my sunglasses so they wouldn't recognize me. Humph. And I was crawling really fast!
But not to worry-this is how I get from A to B now.
Posted by lymemomtooo (Member # 5396) on :
I will send some depends. You probably needed them for the almost car crash.
There is a plan, I do not understand it yet, but think you will be around for a while yet. You would not have had so many struggles had there not been a plan. You know at the least that you have helped others.
The monthly dinners are off since the restaurant is closing. I think we need to find another place in the area that supports non-profits. Look around for us if you have some spare time.
Call me. Let's do lunch sometime soon. lmt
Posted by trish4 (Member # 14156) on :
I was shocked to read this. You wrote: I have been told, and I choose to believe, that we agree to accept the course of our lives before our souls descend into our bodies and our life begins on earth. We choose to accept whatever tragedies occur so that others may learn from or be tested by their interaction with us.
I didn't think anyone else thought about life and our souls the way I do. And what's funny is that the person who gave me this philosophy which I believe hands down now, was a psychic. (dont believe in all psychics) but I went to 2 different ones and they BOTH told me that I have an old soul and that I keep being reborn and will keep being reborn until I find true happiness. I definitely do think that we have a say in if we want to have the life we will have before we are born, and if it is a harder life then some so be it cause theres a purpose and a reason. Ok I'm done talking religion,,just wanted to share my thoughts
oh yeah and my mother saw a psychic a few months back who actually told her that Lyme was the reason I was so ill. That's one of the main reasons I started doing research on it and found out I had it. She told my mom I would be sick for awhile but would get better. Lets hope shes right.
Posted by AliG (Member # 9734) on :
I WANT ONE OF THOSE!!!!! Did you get your insurance to pay for it?
After you had near pooped your pants, did you by any chance hear "PSYCH!!" followed by hysterical laughter, in your head?
I know exactly what you mean. It's almost like, "just in case you were wondering....NO, NOT YET!!!, now go get busy!".
I sure am glad they found the brake before the car found you!
That could have been a wake up call for the driver, as well. Perhaps they were too caught up in their own little world and hadn't realized the impact their actions/negligence could have on other people's lives.
I don't think the nurse who unloaded a line of air into my shoulder will ever do that again. That could have been a wake-up call for her OR a message for me. I don't know because I don't remember MY contract. (like the way I tied this back in to the thread? )
I think we just have to roll with the punches, even though some are much more painful than others.
They say "That which doesn't kill us makes us stronger." (I'll bet your legs got stronger jumping out of the way.) I think you are one of the strongest people I've known and I thank you for sharing your strength and pulling me up out of the dirt when I am feeling discouraged.
---- I just came back to see if you replied & found out that I never finished & posted this reply. These TBDs really stink!!! -----
I am sure that it was also an honor & a privilege for Barbie to have YOU as a mother. I pray that she will always remain with you in your heart and that she will watch over you & help you, should you need her intercession. (like when cars try to run you over )
Ali
[ 13. May 2008, 09:08 AM: Message edited by: AliG ]
Posted by AliG (Member # 9734) on :
Carol,
I just wanted to let you know that you've been in my thoughts & prayers all weekend. You still are.
Thanks again for being the wonderful person that you are.
I feel that it an honor & a privelege to consider you my friend.
hugs & prayers, Ali Posted by bettyg (Member # 6147) on :
,,,carol, saw this LONG post, so read only the last day or 2 here on you.
yes, you went thru rough times on mother's day and Barbi's 4th anniversary of her passing; so sorry and praying you will come out of heart-felt sorrow for your precious daughter.
just wanted you to know i hadn't forgotten my wonderful POET friend who LIFTS so many spirits in your kind, caring, thoughtful ways.
darn it, i read where you were bitten again!!! those little suckers
carol, sending my love/prayers to you/yours... Posted by Cobweb (Member # 10053) on :
Up for Wantabe...
Posted by ladycakes (Member # 12619) on :
Oh no, an IV noob!
Newish, at least. I've been doing IV Rocephin via PICC line for almost 8 weeks now. I already miss the showering. My first one sprung a leak a week in, but this one seems to be holding steady.
It's weird, it seems like when I first started on it, I immediately noticed a significant change. Since then, nothing. Three days in, the stiffness and pain I had in my legs is almost entirely gone. Today... well, I feel about the same. Legs are still pretty good, fatigue is still not even trying to get with the program.
This past week I think maybe I'm herxing, because I'm perma-exhausted. I haven't slept this much since I had mono.
I think I need to start keeping better track of my symptoms. I'm pretty terrible at keeping up with that, so I really need to find a good easy system.
Any encouraging news from our IV graduates?
Posted by Cobweb (Member # 10053) on :
Don't expect much in 8 weeks. I would have been a bit discouraged if I had had to stop after 8 weeks.
The shower's were a bit of a nuisance trying to keep the picc dry. I wound up holding onto the shower curtain rod for two reasons-to keep the arm out of the way, and for balance.
But , oh the JOY of finally being able to shower, as long and as much as I wanted to was worth the wait. Lather Lather Lather
Over all the IV was worth every drip! I'll check in on you every once in a while to see how you are doing.
Posted by ladycakes (Member # 12619) on :
As annoying as it's been, it's been completely worth it. Even when I had to get it replaced. Even the 6 hours of driving to get it put in.
I just talked to a nurse at my office last week though, and she said that they may be taking that out at my next visit, which would be a total of 12 weeks on Rocephin.
She didn't say why, I hope my liver isn't exploding or anything. We'll see on the 16th.
Posted by Cobweb (Member # 10053) on :
Do you have some place local to go if you experience any problems with the picc?
And I hope you are taking Actigal for gallstones?
I don't think Of PA as a third world country-why do you have to drive 3 hours to and from(for a total of 6) for a picc line?
I hope you can keep it longer and your innards are holding up to the meds, but I'm glad you feel what you have received has been of benefit and not too traumatic.
Thanks for the update.
Posted by wantabe (Member # 14703) on :
Still having problems showering as well...I've used the plastic sleeve the infusion group sent, clingwrap and tape, and press'n seal.
Is it worth getting a cast sleeve? I don't want to spend the $$ if they leak as well. Any and all ideas welcome.
IV FOR 1.5 weeks= LESS HEADACHE PAIN!
wantabe
Posted by Cobweb (Member # 10053) on :
The saran wrap maneuver was always too hard for me-it usually wound up not tight enough and sliding.
So I layered with sock then plastic sleeve of newspaper taped at each end.
Plus I would really try to keep the arm away from the water.
As soon as I got out of the shower I would get it all off immededitale couse it still got damp. Then I would dry the area real well.
Glad your method is working for you Wantabe. Will keep an eye out for a professionsl sleep someone kindly sent me.
Posted by ladycakes (Member # 12619) on :
My LLMD is about 2.5 hours away. There's a somewhat closer one, in Morgantown, but she isn't taking new patients. For some ridiculous insurance related reason, I had to go to their local hospital to get the PICC placed, instead of one close to me.
Which may be just as well, since I've gotten the run around from our local doctors. I was told if the line had any problems, to go to the local ER. So when it was leaking, that's what I did. They said they couldn't do anything with it (at least, not at 6:00 at night), but that I'd definitely have to have it changed. They put in a port in my hand, so I could get my antibiotics that night, and referred me to a local doctor. When I saw him the next day, he said it was fine, and to keep using it. He didn't even re-dress it after taking the bandage off to check it out, just stuck some gauze in it and sort of taped the top! I called my doctor to tell him about the ordeal, and ended up having to drive up to Hermitage yet again to get it changed anyway. It was all pretty ridiculous.
But yes, the benefit has outweighed even all these shenanigans.
Posted by wantabe (Member # 14703) on :
almost two weeks, and the leaking at the insertion site is slowing down
Had to add a second sticky wing holder- the original one at the end of the picc tubing and one at the insertion site where the tubing comes out of my arm. This has stabalized the tubing enough that I think it has started to heal around the entry area.
Tape was eating me alive and wasn't keeping the tubing in place.
Leaking is really a bother and hard to keep the area dry & germ free- I hope this is the answer.
Hope yours stops soon! Posted by Cobweb (Member # 10053) on :
My picc was stictched in place, so I didn't have to rely on bandaging to keep it in place.
Now I am trying real hard to remember what else Nurse K did to keep it anchored???? Oh it wa a way of wrapping the tape around the tubing when she changed the bandage.
Hoe to explain it-a thin strip she wraped around in the shape of the magnetic ribbons on cars , then she taped over that.
Ladycakes- Ha! seems the medical personal are so cavalier and casual about matters that seem so important to us.
Sometimes I have this diabolical thought that doctors like to add a little excitement to their lives by playing with ours!!!!
Anyway- I could not tolerate the original bandaging materials used which were see thru-so we had to switch to a brand where the site was not visible at all times.
But I would occassionally take a peak myself-fortunately did not let any germs in. My own form of risky behavior. Posted by laurie sm (Member # 14584) on :
Wow- This is a long thread! I am getting my Picc line this week and will start infusing Rocephin. I am petrified!
Actually-trying not to get too excited that this might finally help my brain.
I am hoping and praying that it helps my neuropathy, headaches and brain fog. I have been on various oral abx for 7 months with no improvement.
Thankfully I have a wonderful nurse friend who is going to be monitoring me but I have to go to hospital out patient to get the Picc line inserted.
I have already had 15 IVIG infusions over a 3 month period so this should be a piece of cake right????
I guess this isn't the best time of year to be getting this with the trouble showering in the 9o degree heat but I will do ANYTHING to start feeling better!
Thankfully I have good ac in my house and I will just have to put my legs in the pool if I feel well enough to get in it!
Cobweb- your nurse stories were funny. I have a few of my own!
Laurie
Posted by Cobweb (Member # 10053) on :
LaurieM-"I am petrified!" This too shall pass.
And here's hoping the Rocephin,too shall pass -thru the brain barrier , forward march...CHAAARGE
Posted by Curiouser (Member # 14128) on :
I joined the rank of piccled lymies yesterday. What fun! Not.
Took them 4 tries to get the danged thing in. But it's in.
Got my first dose of Rocephin too. No reaction, other than an ongoing case of post nasal drip. If that's all I get, I'll take it.
Expecting my care package and the nurse to show up today.
And it begins!
Posted by Cobweb (Member # 10053) on :
Glad you could make it Curi !
This is the rest of the story I didn't necessarily want to tell you beforehand.
If it weren't for co infections I would be living happily ever after.
Posted by ladycakes (Member # 12619) on :
Well, I'm getting the PICC out tomorrow!
It's been three months, which I know is short compared to a lot of you. I've seen a lot of improvement with it, and it's certainly gotten the ball rolling for me. I'm going to try going back to oral abx, and as doc said, I can always go back to IV if I need to.
I'm nervous/excited, so we'll see how it goes.
Posted by Cobweb (Member # 10053) on :
I see you posted yesterday-everything go smoothly?
I literally had grown "attached" to my picc. It didn't want to come out. Nurse was pulling so hard it was taut.
I couldn't look. Ack. But of course, eventually it released. I thought of framing it. I was very fond of my picc. Posted by gicuenitro (Member # 14704) on :
you could have kept the last bit of info to yourself. haha <3
On july 7th it will be 4 months....power picc line 2g's once a day....halfway through, ran into doc problems, specialist in new york dr. h wanted it to stay in and go 2gs twice a day 4 days on 3 days on glutathione. Wow...really trying to get me to herx huh?
Its caused a mixup in the change of pharmacys/docs but I think it all happens for a reason. Im saving a bunch but still no insurance and every day this thing is killing me finacially.
But, Gotta be done right? I have such a fear of blood/needles, im happy to be where im at, although I would be excited to get it removed, dont want to think about the gory details..lol.
Congrats to everyone who has stuck it out with success! Its a tough thing to live with, Even with the super cool allen iverson shooting sleeves the team donated to me to cover my left arm in style! Posted by Cobweb (Member # 10053) on :
"Even with the super cool allen iverson shooting sleeves ..." haven't a clue here, may get a chance to google.
But I know when it got to be summertime and short sleeves were back in season I was trying to think of how I could make a "picc line fashion statement".
Closest I got was wrapping one of those SURVIVOR thingy's around it. But it was too big and had to be pinned , and got all bunched up. Not practical.
Since I mostly used the cuff from white sweat socks , I looked for snazzier socks I could cut the cuff off of. but they just don't make fashion tube socks.
I agree-having the picc line pulled was just about as traumatic as having it put in. I was afraid I was going to need to have it surgically removed. Then SNAP and out it came!
Take Care, and best of luck, Cobby
Posted by AliG (Member # 9734) on :
I used flesh-colored fishnet knee-hi's, with the feet cut off for stylish(IMO) summer fashion statement.
I think it was a little less attention-grabbing.
Posted by AliG (Member # 9734) on :
Started Biaxin today, ordered my artemisinin and awaiting the clearance for ROUND TWO!!!!!
No kitchen table midline for me this time. Going straight to the hospital for the PICC.
Wish me better luck this time
LLMD said he'll probably keep me on the Biaxin WITH the Rocephin this time around.
PLEASE LET THIS ONE WORK!!!!!
Posted by Cobweb (Member # 10053) on :
Sorry Ali-I missed this last post.-yes I do wish you well with this next go around.
Hmmmm-fish nets-very creative.
Posted by AliG (Member # 9734) on :
Up for those starting IV.
I miss Cobby! Posted by lymemomtooo (Member # 5396) on :
Ali, so do I ..Hope she has a Happy Halloween...send her hugs from me if anyone is reading and in touch..lmt
Posted by AP (Member # 8430) on :
Wow this brings back memories... I got a new IV pole yesterday - with wheels!!! I am so excited. I have one for the car, and one for home now - and I'm totally mobile...
When the delivery man came to the door last night with the pole in hand, I thought about this post. Glad to see it again.
Lymenet just isn't the same anymore. Posted by Robin123 (Member # 9197) on :
I think you might be ale to find Cobweb over at lymeneteurope. Me, I have a hard time being in today and tomorrow simultaneously...
Posted by AliG (Member # 9734) on :
This is still IMO some of Cobby's finest work. A definite Cobweb Classic. Bumping up for newbies.
Posted by AliG (Member # 9734) on :
up for IV newbies :-)
Posted by Robin123 (Member # 9197) on :
Wow - haven't seen this thread in a while - makes me lonesome for Cobby - and hi to you too, Ali -
Posted by Hoosiers51 (Member # 15759) on :
Cobweb has been posting recently at Lyme Friends (http://lymefriends.ning.com) Note there's no "www."
She was kicked off for awhile, but then the decision was made to let her back a few months ago.
So anyone who misses her can surely find her there.
I had never seen this thread! Posted by Emmy3 (Member # 23780) on :
I did IV Rocephin for 3 months. I followed with orals. I felt pretty good for about 3 months. Then I relapsed. Despite not feeling well again, the Rocephin helped with the brain fog, and concentration issues.
Posted by AliG (Member # 9734) on :
Hi Robin!
Sorry but I must have not have had e-mail notifications on or perhaps you posted before I remembered to edit my email address in my profile.
I've missed everyone too!
Last I'd talked to Cobby she was going to go back to another forum, not sure which but think it was one I hadn't joined.
That reminds me. I should really be touching base with her. I've been missing her too. Posted by Robin123 (Member # 9197) on :
Hi Ali - I looked to see who brought up this thread today - I think Cob is still over at lymefriends. Wonder if she is ever going to publish this IV Chronicle?!
Posted by AliG (Member # 9734) on :
![[woohoo]](graemlins/woohoo.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[Wink]](wink.gif)
![[Eek!]](eek.gif)
![[Razz]](tongue.gif)
![[lick]](graemlins/facelick.gif)
![[Frown]](frown.gif)
![[cussing]](graemlins/cussing.gif)
![[hi]](graemlins/hi.gif)
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![[Mad]](mad.gif)
![[sleepy]](graemlins/sleepy.gif)
![[lol]](graemlins/lol.gif)
![[spinning smile]](graemlins/spinsmile.gif)
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& then lay down.
![[tsk]](graemlins/tsk.gif)
) I'll just have to tough it out.
