Topic: Reporting from the IV line. A Cautionary Tale
stymielymie
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Member # 10044
posted
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 Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Cobweb
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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?"
posted
Thx for the update, Carol. You're a trooper. Does this mean you still have your pole and your nurse?
Posts: 13171 | From San Francisco | Registered: May 2006
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Geneal
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posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymemomtooo
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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
Posts: 2360 | From SE PA | Registered: Mar 2004
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Cobweb
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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-
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 )
posted
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!
posted
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!
lymemomtooo
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Member # 5396
posted
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
Posts: 2360 | From SE PA | Registered: Mar 2004
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Cobweb
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Just for you AliG from the Been There Done That files.
ps- It's been over 6 months and I love my IV line!
AliG
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Member # 9734
posted
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 ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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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.
posted
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.
AliG
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Member # 9734
posted
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
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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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.
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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.
Posts: 984 | From San Diego | Registered: Nov 2006
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AliG
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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.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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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.
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.
posted
Thanks for getting back to me Cobweb.
Posts: 984 | From San Diego | Registered: Nov 2006
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AliG
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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.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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This card is just tooooo cute. Enjoy remember- no viruses or ticks attached.
posted
up for AliG How are you doing?????
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AliG
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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
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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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.
AliG
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Member # 9734
posted
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?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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There was sherry in the soup. I think that's what messed me up.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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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.
AliG
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Member # 9734
posted
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
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
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
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
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.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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".
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
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
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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 ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
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.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
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.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
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
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
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!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
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.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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 ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
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.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
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posted
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.
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sometimesdilly
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posted
hi Ali, tzarina of sweetness: sent you an email... dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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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
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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