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TeeDee 08-05-2005 08:17 AM

PICC line people
 
Hi all,

This week Romans12:12 started a thread after she had a PICC line installed. Bothrops, Betterdaysforme, myself and some others joined the discussion because we were in similar circumstances with new PICC lines. During those discussions we talked about keeping a running thread going so we could compare notes and keep eachother up to date on progress, problems, etc. I'm hopefully doing that with this post.

I'm one week into my Rocephin infusions and for the last few days have been feeling okay. I've had stomach problems, including diarhea, and that is slowly getting better. My PICC line site hasn't given me any trouble and the infusions (5 days on, two days off) are getting to be easy as pie. I have a visiting nurse come to my home once a week to clean the site and draw blood. I'm fighting a mild yeast infection with probiotics and OTC medication.

I'd love to hear how everyone else is doing and I've been especially concerned about Romans, who was having a hard time.

My best to everyone.

TeeDee

Bothrops 08-05-2005 10:09 AM

Re: PICC line people
 
TeeDee I am doing fine so far. I am on day 7 of rocephin. My PICC exit site looks good. The first four days I had weak pain in armpit and pain in upperchest and neck, yesterday and today have been pretty good. My nurse just left and the site was cleaned for the first time. All they put down was a clear bandage and she had to use the tape that I already showed allergies to. She could not change the line extension or end because they sent me the wrong parts. The part they sent was to short. I was told I should not mow my lawn and if I had to I should do it the day before she sees me.

One thang I have noticed about an hour after infusing is that I get feeling colder and very fatigued, more so than normal. Also my headaches are comming back, I have had four in seven days. I was down to one a month! Even though I have not run a fever I have felt very feverish. I have felt more spaced as well.

I hope you both are doing well and this time next year we can laugh about it.

Derek

Roman77 08-05-2005 11:38 AM

Re: PICC line people
 
Hi guys....glad to hear that you are both surviving and seeming to wade through the increased symptoms you're having. wish I could say the same. dr. c has put me on a couple of new rx's to help me out with the extremem nauseousness and dizziness i've been having. Phenegren and actigall. At least my symptoms for those are minimal now, maybe teedee you could ask your doc about the phenegren? i know it helps me tremendously so i don't feel like puking my guts out. I just wish they could do something for my pain. I'm herxing terribly now, am on day 9 of my 2g Rocephin treatment. Depsite my vicodin, I am still waiting down the time til I can take my next dose. I am really concerned about the swelling I'm seeing in my hands and feet...they are extremely red at all the joints, swollen, and very bruised. Not too mention all of the intense flu feelings, brain fog intensity, severe spike in fatigue - it almost feels like narcalepsy, and the itchniess and "lobster" flushing attacks are extremely bad. I've been taking benadryl and trying to take baths when I can, but I am just too weak.

Have a call into the doc to see about taking a few days off of the rocephin, kind of like what your doctor ordered for you TeeDee, guess I'll see what they say. Think my bod could use a rest from the meds for a few days. I just can't go through another night like the last one...wanted to go to the er I hurt and itched so bad, and every sound or light was like a knife in my head. All I wanted to do was fall asleep, but I couldn't. This whole situation is just so depressing. I hate feeling worse to get better. But finally was just so exhausted from crying, itching, and hurting that I passed out thankfully - would have gone to the er for sure if it hadn't have happened that way, was already at my limit for vicodin and benadryl and still had 2 hours to wait to take another dose and felt like i was going to go out of my mind.

oh hey - good news...the doc office just called and i am supposed to stop my dosing until the swelling goes down. they were definitely concerned about the high level of pain and the herxing, so they want me to stop for a few days and then restart when i feel stronger. i am so relieved on one hand, but on the other wish i was strong enough to wade through this to get better sooner.

well better go for now guys, glad that you started this post teedee. hope you both will continue to fair well and make some progress soon. keep us updated, i hope we'll all be sharing good news soon.

TeeDee 08-05-2005 08:25 PM

Re: PICC line people
 
I'm so glad to have heard from both of you! When I started the thread this morning, I wasn't feeling too bad but as the morning wore on, I went down hill.

It's been warmer than normal here (near Portland, Oregon) and I've pretty much stayed in the house with the AC going. I don't know if part of my feeling lousy has to do with being house-bound, but this afternoon my husband took me for a ride and eventually I began to feel a little better. It's our 27th wedding anniversary today and I had really wanted to at least make him a decent dinner. Instead I talked him into going golfing with our son and they're going to get something to eat on the way home.

My infusion went well and I really hope the diarrhea finally comes to an end. Romans, I'm so sorry about how badly you've felt and am glad that your doctor is concerned about it and is taking action. Maybe just having a break is what you need right now. I want you to join Derek and me when we look back on all our misery and laugh about it. Sounds a little far-fetched when we're suffering, but let's all believe that we will be well.

I'm keeping both of you in my prayers and hope we hear from Betterdaysforme, too. Hope you sleep well and have a really good day tomorrow.

TeeDee

GomezNC 08-06-2005 06:24 AM

Re: PICC line people
 
I just had my PICC line put in on Thurs. So far so good. Does anyone have tips on covering the site for showering?

ticker 08-06-2005 06:27 AM

Re: PICC line people
 
Hi GomezNC. There is a great cover you can get for your line so you can shower without getting it wet. It is called a mid-arm protector and you can order it from Brown Medical. It definitely beats using Saran wrap!

GomezNC 08-06-2005 06:35 AM

Re: PICC line people
 
Thanks, I will look into ordering it. But for now I am going to try the Glad press and seal. Do I put it over the sleeve, or should I put something else over the sleeve before I put the Glad seal on?

Bothrops 08-06-2005 06:42 AM

Re: PICC line people
 
GomezNC are you a Dr.J patient? I am guessing that NC stands for North Carolina. Dr. J's staff told me to use the saran wrap "press & seal" and it has worked very well. Just wrap it around your arm and use the tape around the top, just to be safe. Ticker said that you can buy a sleve that is water tight at a med. supply store.

Keep in touch and let us know how you progress.

Derek

Bothrops 08-06-2005 06:44 AM

Re: PICC line people
 
This proves how slow I am on the keyboard!

GomezNC 08-06-2005 06:46 AM

Re: PICC line people
 
Thanks Bothrops,
Yes I go to Dr J. So I cover most of my upper arm and cover with the tape for the dressing? I haven't been on the site in a while. I have been having some bad times since i first joined in Dec. I am going to try to come to the site more.

Bothrops 08-06-2005 06:52 AM

Re: PICC line people
 
I am having a problem with the clear "skin tape" that my nurse put on me yesterday. At the corner it is red and very itchy. I guess it is another allergic reaction, funny how it is only happening at that part of the arm. Is there anything that will help this like benadryl cream or something. I know it sounds trivial, compared to the lyme I have dealt with for two years, but it is freaking itchy.

TeeDee 08-06-2005 08:41 AM

Re: PICC line people
 
Hi, Gomez. I'm glad you've joined us. For showering, I got a plastic sleeve called the "Bath Guard" from my Home Health care provider and it's great for when I wash my hair. But otherwise I just use the Saran Wrap and keep the PICC line arm out of the water.

Derek, as for the tape problem, I bought a 3-M tape called "Micropore" that I use to tape down the clamps to the PICC line so they don't flop around. The tape the nurse used was so sticky that it was the only painful part of the whole infusion and I was worried that it would irritate my skin. Something I always keep on hand for any kind of skin issues is called "Vanicream" and maybe that might help you.

Okay, PICC people, have a wonderful weekend and let's trade some stories of progress along the way!

TeeDee

Betterdaysforme 08-06-2005 11:45 AM

Re: PICC line people
 
Hi Piccy friends,

I am so glad that you are doing okay TeeDee and bothrops. And welcome to this thread Gomez. Boy when I was doing the picc-line I think I was one of only 2 at the time. Maybe things are starting to improve as far as being approved for this.

TeeDee, I never had diarrhea but was very regular and "soft" if you know what I mean. Make sure you continue to take the probiotics for a long time after you come of the line though. I stopped a few days after they took the picc-line out and I had what you could call "exploding diarrhea". :eek: It was not pleasant believe me. It took about a week to straighten me out. I used to have the nurse tape a big square of gauze where the extension was going to lay after you coiled it because it bugged me. It was great because it cushioned my skin.

bothrops, You must have an allergy to the tape. Is it plastic? The reason I ask is the chiropractor I went to years ago put little round band-aid looking things all over me (about 12 of them) that had little teeny accupuncture magnets attached to them. When I took them off in certain places I had a big round red mark that was puffy. The magnet didn't pierce the skin so we deduced that I couldn't tolerate plastic. I didn't think the clear tape was plastic but maybe it is. Cloth might work better but really hurts to take off.

Gomez, So glad you are on the IV. Be sure you take plenty of probiotics and make absolutley sure you take milk thistle to keep your liver and gall bladder clean. I didn't know about the milk thistle and my liver enzymes skyrocketed and they had to pull my line. I don't want that to happen to you.

Romans, What to write? Just that we are thinking of you and hope that you are resting comfortably. Have the few days off helped? I hope so.
You must really be overloaded or just incredibly intolerant of abx. I guess it really doesn't matter which of the two just as long as you start improving. You know that you are on everybody's prayer list and that has to count for something. (((((((hugs)))))) on their way.

BDFM

Roman77 08-09-2005 12:09 PM

Re: PICC line people
 
Hi all...just checking in to see how you are all fairing after the weekend. Any good news? None here, posted on the main board cuz I was just so down about how bad I was feeling. Feeling a little less nauseous and less swelling and pain right now, but still feeling crappier than I was before starting the rocephin. But still praying I'll see some positive results in a few weeks. Hope you're all seeing some positives. :)

Bothrops ~ just a suggestion about your skin allergy. I have the same issue with most kinds of tape and adhesives, I have found that "silk tape" is the only thing I can tolerate. Not sure if there's a different name for it but that's what my nurses call it. Maybe that will help you out? Worth a try I guess. Also since my line is a hickman I have to have a cover over my site on my chest and they use soemthing called Sorbaview and I don't break out to that either. I think if you just have a PICC you probably can't use that since it's like a big square bandage, but just thought I'd mention it since it's worked so well for me.

Bothrops 08-10-2005 03:06 PM

Re: PICC line people
 
Good sugestion Romans,
I think it will be alright, it itches every now and then but it is so trivial compared to the dizziness/fog, pain and weird sensations. All my symptoms are slightly increased, like one point on the 1-10 scale. I hate that you are going through so much right now and like every one here, I feel for you. I have a real good feeling that you will be feeling fine real soon.

Keep your head up!

TeeDee and GomazNC how are you all doing?


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