How will I know when I need a new one inserted? I am 2 weeks shy of a year. I stopped Rocephin for a month and had a horrible relapse.
I am now back on my 2 grams Rocephin twice a day, 4 days a week, a packet of Mepron twice a day, and 1,000 mg of Zithromax a day. Hanging. But not to where I was before the break.
My home health nurse always told me to do a blood return to check it.
But Doc said that is incorrect as long as it is going in there is no problem.
I have fallen asleep with doing my Rocephin and had to pull out huge 1 1/2" clots from the line (GROSS!)
I flush with Heparin after every infusion. Rocephin, Phophotidyl choline, Glutathione, EDTA, etc.
Any info would be helpful.
Thanks, Lyme x 9
Posted by pineapple (Member # 11904) on :
As you know, people can die of blood clots so be very, very careful to not do that again. You will want to watch for signs of a failing PICC, including signs of infection, slow infusion, difficulty flushing, etc.
We do not want any more lyme fatalities. Please be careful.
WHEN in DOUBT>>>>> Pull it OUT!
Posted by cantgiveupyet (Member # 8165) on :
I dont have an answer for ya, but just wanted to say hello!
Can you set an alarm so that if you do fall asleep you will wake up after the infusion is done??
Posted by jblral (Member # 8836) on :
If you get your rocephin delivered in a "pump" type infusion ball, you never have to worry about if whether or not you fall asleep while you are infusing. You never have to worry about air bubbles in the line.
Posted by beckyM (Member # 13944) on :
I dont know if this puts your mind at ease at all...but, it would actually take an entire tubing line filled with air to cause death...so they say...when I was teaching patients to do their own infusions, this of course was one of their BIGGEST concerns! Understandably!!
that being said...personally, I wouldnt want air bubbles going into me either...
If you have a regular pump, it should have detectors on it to detect air bubbles of any magnitude. But those little ball infusors are Fantastic!!
As for the the nurse saying you "have to have a blood return" she is wrong in my experience! The doctor is correct! Sometimes, a fibrin flab forms at the top of the PICC line and the pressure of you pulling back for the blood return causes that flap to close not allowing the blood to flow back into the PICC line.
You may find that next week, you may get a blood return again because that fibrin flap may break off (not a concern!) However...the large blood clot is something I haevnt see and cant even begin to commment on...might want to mention it to the doctor...
Becky
Posted by CaliforniaLyme (Member # 7136) on :
ONE PICC LINE FOR A YEAR??? they are not meant to be used that long!!!!!!!!!!!!!!!!!!!!!!! The ER people once told me every 3 months was TOPS for a picc line!!! That more than that is bad-
Oh my god, I can testify to air bubbles, I had a Visiting Nurse, my first & only, with a grim sense of humor, she injected me with an air bubble ON PURPOSE to ease my mind about it, I was scared, my FIRST day, she said, "I just want you to know that is NOT going to kill you so don't worry about it!" YUCK!!!!!!!!!!!!!!!!!!!! She didn't warn me, just did it. And YUP I WAS fine and it DID make me relax about it but STILL! AGH!!!!! Scary!!!
Best wishes, Sarah
Posted by feelfit (Member # 12770) on :
Sadists aren't they Sarah!
Don't worry aobut blood in your line, don't do another a heparin flush, you'll use up your inventory.....
your arm is swollen and red from the trauma of the picc line, relax.....
I've never worn a mask when doing a dressing change, you don't have a cold and neither do I...
In the last threee weeks I have been told all of these these things by my infusion nurse.
Right, let's put it in your arm and see how you react!
Rhonda
Posted by feelfit (Member # 12770) on :
By the way, how in the world did you pull 1 1/2" clots from your line?????
Posted by beckyM (Member # 13944) on :
Oh my god Feelfit...I just had to pick myself off the floor after reading what some of the things your infusion nurse had said to you! If the lyme isnt giving me chest pain...what your nurse is telling you sure is!!!
Geez...what have I been doing wrong...as a Home health nurse who is certified in PICCs and central lines... I ALWAYS WEAR A MASK...and have my patient look away...sometimes...I even stick a maks on my patient if they have the need to constantly look at what I am doing.
And dont worry about the blood in your line??? Well, lets just hope it is just a tiny bit and it doesnt clot the line and you dont end up having to have another PICC line placed.
And as for that red and swollen business...sometimes there is a tiny amount of redness and swelling at teh insertion site when it is first placed...but generally it shouldnt be that large or have any warmth to it.
OH MY GOD...WHERE DO THEY FIND THESE NURSES??? Please know that not all home health nurses are idiots...
Please tell me someone out there has had an experience with a nurse who had a brain...restore my faith!!!
Posted by feelfit (Member # 12770) on :
Becky,
Actually, My home health nurses are WONDERFUL. They do wear masks, have me look away, insisted on a new IV administration kit for each day...
and they have graciously answered all of my questions.
The infusion nurse who I am speaking of is my Doctors infusion nurse. She only changed my dressing 1x ( praise god ).
I live in a rural area in Northern MI and my Doctor is 4 1/2 hrs away. They send my drugs FeDEx and my local hospitals Home Care sees me 1x week.
But, my doctor made me go down state to see his wonderful infusion nurse to make sure that they were doing things right up here!
Hope that is the end of that!
BTW my redness and swelling was on my bicep. I did a lot of hot compresses and it went away but left some bruising.
I LOVE HOME HEALTH CARE NURSES
Rhonda
Posted by beckyM (Member # 13944) on :
Ok, I feel better now ...I can admit...I know nothing about Lyme...That's why I am here, to learn. But I keep reading the nightmares about people and their nurses and I want to cry
I am so glad you have a GOOD ONE!!!!
Becky
Posted by lymex5&counting (Member # 7202) on :
Thanks so much for all the responses. This is the first x I have gotten online since I posted this.
I have had my oldest lymie down with Pneumonia. In the hospital ER with a complete duck. When I went to the bathroom the Dr came in and asked my 15 y.o. you really don't have the things your mother said do you? Lyme, coinfections, heavy metal poisoning, thyroid issues, etc. He replied yes, I do.
Luckily my son didn't tell me till we were 1/2 way home and I had taken my Xanax or I would probably be in jail.
Funny, but he and I had just discussed how detrimental the comments he made to the Neuropsychologist that Dr J sent us to several years ago the day before so he knew better. God works in mysterious ways.
I also have Bronchitis right now and another lymie kid with a broken arm so I haven't had x to deal with this.
Air bubbles have never been an issue. Last week I lowered my bag below my heart and I actually got out about an 8 1/2"clot.
Someone asked how I did this I opened the Picc and and it was in the line. I used to let the red blood run back in if it was minimal.
But this was black and came out in one piece when pulled from the IV tubing. I threw it all away and changed my extension.
I was going to get a chest xray to check for placement.
But now I think I am just going to get a new line.
It flows a little slow and everytime I flush or do an IV I get a headache.
I think there is still more in there and I can't get it out.
I just had such a bad experience getting it inserted I really don't want to do it again. Also I worry about flagging the ins getting another one. They haven't questioned Rocephin for a year.
But also I have met my out of pocket so it won't cost me a dime.
Also while I don't do my blood test with it. I do want blood return to do the Phospholipid Choline Exchange. I realized I ordered 5 boxes from Switzerland.
Do I have to use a butterfly to get the blood out and then run it back thru the picc or are you guys just running the phospholipid, blood, and glutathione flush thru your butterfly?
Do you think it is okay to get the PICC while I am sick?
I do all my own dressing changes, even with the stat lock.
Thanks for your support. I know I haven't posted for along x.
Nice to hear from you Scorp! I hope things are going well.
Please pray that we all get well. I am trying to get in a urine and hair analysis for 5 of us before the end of the year to see if we have made any progress the last year and a half of detoxing.
But with everyone sick I haven't felt comfortable giving DMSA and EDTA. It is also time to do 2 rounds of Mebendazole.
Thanks for listening, Lyme x 9
PS: One of my step sisters 2 youngest kids 6 months and 6 years were diagnosed with Muscular Dystropy today. Her father my step dad has MS (Yeah right, more like a complete moron Neuro with a very posititve IGM ++++'s on 31 or 34 can't remember exactly but since the IGENEX says negative he and no one else believe it is Lyme) My mom is in treatment for lyme original dx Fibromyalgia.) Anyway I did a search and didn't find much info.
Anyone out there with a MD dx to start?
Thanks again for listening to me ramble. But unfortunately need an ambien and a xanax to get any sleep.
Posted by lymie tony z (Member # 5130) on :
If you're having trouble with bronchitis or peneumonia with rocephin then When it happened to me I switched to clindamycin...or levaquin....
hope you get better....I think it may be time to relocate your picc line as well....
something does'nt sound all that right to me!
I've neve encountered the things you say you are experiencing with blood clots and such.
zman
Posted by lymex5&counting (Member # 7202) on :
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I hope things are going well.![[sleepy]](graemlins/sleepy.gif)