Tuesday, January 26, 2010

PICC Chick Week 3

Today, it's been three weeks since I had the PICC put in. I'll save the "is it working?" conversation for another post. But for those who can't wait, I'll just say that I have good and bad days, just like before, but I am seeing a few positive changes, like more brain power and no panic attacks so far.

This post is really just a few things about living with the PICC. There's not that much information out there, so I'll try to share as many details as I can remember.

First of all the tube-sock-gauze thing they give you to hold everything in place itches like hell. BUT it has the right amount of elasticity. I tried cutting up tube socks, but they were too tight and cut off my circulation. So I cut up some old pajamas (nice and soft) and had my mom make me these tubes that I wear UNDER the gauzy thing. See above. Someone kind on the Yahoo Lyme group told me there's a woman making PICC covers on etsy. Definitley need to order for spring/summer, if I still have this thing. So here's some show and tell...

The first picture above is the insertion site six days after. I was pretty wigged about the bruising. But even more wiggy was the pins and needles I kept feeling all around the site (we think it's damaged little nerves) and the pressure I was feeling in my chest and pain in my arm and neck. But it's all starting to get better with time and the help of my chiropractor.

Second picture is me doing my infusion. You can see some of the crazy bruising, which got worse after this photo. It takes about 12 minutes to do everything: sanitize, flush saline, Rocephin, and another saline flush.

This last picture is the site three weeks after (yesterday) and you can see that the bruising is getting better. My skin really didn't get along well with the Tagaderm (the clear patch you see above), so the pharmacy sent me SorbaView (not pictured), which is more breathable and kinder to your skin. It's not as waterproof, so you need to be more careful. Which brings me to my next point....

Another kind soul in the Yahoo Lyme group pointed me to Dry Pro for a water proof PICC cover. I ordered one and it has kept me dry in the shower (don't have the guts for the pool yet), but I have to say, I can't get it on by myself without hurting my tender skin or pulling on the Stat Lock (the thing that holds the PICC in place above). Soo...I'm sticking to the Saran Wrap/waterproof-first-aid-tape showering method during the week and am using the Dry Pro on the weekend when I have help.

More later....


Casey said...

Thank you for posting this. I had no idea it would look like that. You are right there isn't a lot of information out there about PICC lines

britta said...

I had my PICC line placed on the 5th, so I am about 3 weeks into my treatment also! Mine looks a tad different than yours...but it is still the same concept! I take my rocephin over about a 20 minute span with a little pump. Pictures coming soon!

Glad to have found your blog!

Sharon Wachsler said...

I had really bad skin reaction to tegaderm, too, as well as the statlock and especially to the chloraprep (the stuff they use to clean the site when you change dressing). What we do now, which works soooo much better is:
- IV 3000 type of tegaderm (the most hypoallergenic and still waterproof)
-instead of statlock, we use a biopatch and hold line and patch in place with steri strips
- instead of chloraprep, just alcohol wipes.
Sooooo much better.
It took a lot of trial and error, but I got the ideas from the MANY other Lymies who had bad skin reactions to the usual PICC supplies.

Lyme is real said...

My girls and I also had bad reactions to the Tegaderm. I have done great with smith & nephew's IV3000 1-Hand. On the recommendation of my nurse after my last picc line, I saved a dressing in case I needed another picc. I did and took the dressing to the hospital with me. We're also sensitive to adhesives in bandages and tapes now, so just be on the look-out. Glad your new dressing is feeling better!

june said...

Good for you for posting these and sharing the info! Also, yer cute!

Seattle Sun said...

You rock, Kimmy! You are so brave. I got queasy just looking at the photos. Proud of you!

Kim said...

Casey--glad you found the information helpful!

Britta--would love to see pictures. The pump sound interesting...

Sharon--OMG, what a pain! Glad you found the stuff that works for you and thanks for sharing the details. Good to know!

Kim said...

Lyme is real. Just can't believe both you and your girls have gone through PICCs. You're such a trooper.

Kim said...

June and Sunni,

Sooooooo GRATEFULl for my old (as in I've known you a long time, not that we're getting old) friends.

ticksickchick said...

OH MY! That looks nasty! :)
As much as I love gorey medical stuff, this makes me a bit queasy, haha. Mainly because at my last appt my LLMD suggested a PICC line for me. And I thought I was going to avoid that. It is freaking me out just thinking about it. Your PICC posts are very helpful though and I will definitely refer back if I do end up with a PICC.
You're so brave Kim! So glad to hear your are seeing some improvements.
When you had it inserted, did you NEED someone to drive you home? I don't think I'll have anyone willing to witness insertion but can certainly arrange a ride if needed.
Thanks so much for blogging!

Kim said...


You only need someone to drive you if you decide to take some kind of sedative during the procedure. I was able to drive. But my arm hurt. You'll want to take someone who can help you remember how to care for it and other important info. I'm glad you're finding the posts useful...I found this information hard to find, so hopefully with my experience it'll be easier for others to know what they're getting into.

panthergirl said...

WOW... that's a lot of bruising! Mine looks nothing like that. My line goes into my upper arm (Inside my bicep) which is more "out of the way".

I also use the pump ball for the infusion. It's great because it just automatically delivers the Rocephin over a 30-40 minute period, but I can stick it in my pocket and walk around (when I feel like walking).

Are you very tired from the Rocephin? I find that it really lowers my energy level.

Then again, as soon as I start doing much of anything I hurt all over, so maybe that's better?

Glad I found your blog. Sorry that I needed to. ;)

Heidi said...

I just ran across your blog in a search for hypoallergenic dressings for PICCs. It was so exciting to find other Lymies who are currently being treated, along with their suggestions for dressing alternatives! I just got my PICC line on 2/23, and my first Rocephin infusion on 2/24. Already reacted to the Tegaderm dressing they put on at the hospital, as well as to Opsite 3000, and my nurse was getting nervous.

Thanks, Spirochick, for the info about the PICC cover -- I tried a different brand from Amazon and it leaked on the 4th use.

Kim said...

Hi Heidi! Welcome.

Yes, the SorbaView is much better. Also...I've had some skin peeling lately, so a couple people told me not to use Chorhexadine (sp?) when changing the dressing--only alcohol or betadine. Also, the pharmacist sent me this stuff called Skin Prep to put on your skin before the adhesive. It creates an invisible barrier.

Sarah Nett said...

Hey all!

I am so glad I found your site. I do not have Lyme's, but osteomylitis (an infection in your bone) in my spine where I had surgery 2 years ago.

I got my PICC line placed a little over a week ago. I am on a 24 hour a day infusion drip of antibiotics so i wear them around my waist!

anyway--been having trouble with the burning and stinging and pain at the site where it goes in. nurse tried a new dressing, but told me the more active i am it may bother more. i work out, and hvae a one year old and a five year old. any tips on how to help this? I will die if they have to pull this out and I have to start over with a new arm.

Kim said...

Hi Sarah,

Thanks for stopping by! I had burning and stinging in the beginning for a couple of weeks. My nurse and my doc thought it might be nerve damage to the tiny nerves surrounding it from the insertion. But it mainly hurt around the insertion site, not exactly where it went in. That's all gone now. My current issue is that my skin is irritated and is stinging a bit. I've been told that Chlorhexadine (what they use to clean the site) can be irritating, so we're just using alcohol and betadine. Also, my pharmacist sent me a product called Skin Prep which creates this barrier between your skin and the adhesive.

It's rough doing this with kids, I know. Hang in there.


Lyme is real said...

Welcome Sarah,

We found ice very helpful with the discomfort at the picc site. Later, heat from a rice bag helped. Our recommendation was not to lift anything heavier than a gallon of milk with that arm. I know it's hard with little ones, but try to take care lifting. Hope you're feeling better soon!

Anonymous said...

Thanks for everyone's answers.

Since I last wrote, at only 2 1/2 weeks into my 6 week program, they had to remove my PICC line due to green stuff coming out of the site, so suspected infection. Seems like nothing can go right! Then they put in a temporary line into my hand so that I could still get my meds, but that plugged up after only one day.

So I go back in on Tuesday to get another PICC line put in. Now that I know what to expect with it all, I am dreading it.

Anyway--has anyone known anyone that has had experience with having to PICC line removed? Hopefully nothing goes wrong on the other side too. I dont think I can take this all again!

And my arm that my PICC line was in still looks horrible. The hole still hurts, and it is red and wondering how long it takes to heal.

Thanks all for listening.

Spiromon said...

My daughter also has the reaction and peeling under the bandage. Arm still hurts after a month. And last night only about half the infusion went in. Any thoughts on whether this was a blocked PICC or just her being an angry 13 year old at the time of he infusion, something about gravity being unable to compensate for the rise in inner blood pressure?

Heidi said...

I had to get a new PICC after the first month. I was reacting to the polyurethane in the original PICC, so they replaced it with a silicone Groshong PICC. They were able to put in a guide wire before they removed the first PICC and insert the second PICC over the wire (they removed the wire afterwards) so they could use the same incision. They will only do this if there's no infection and the problem is just a malfunction with the line. Things have gone much better since I got the new line -- much less itching and redness around the insertion site. For the itching that I do still have I use a flexible gel ice pack wrapped in a towel -- cooling it down makes it itch less.

I no longer use the chlorhexidine or skin prep -- just rubbing alcohol. That has helped with skin reactions too.

Someone asked about their daughter's PICC line plugging up...I had a lot of problems with this until my doctor wrote me a standing order for heparin flushes every 12 hours. Turned out my line was clotting. If that happens, sometimes the line can be cleared with Cath-Flo (an enzyme that breaks up blood clots), which can save having to get a new line if that's the only reason.

Kim said...


As far as the skin goes, I stopped using Chlorhexadine. Alchohol only for cleaning. Also, got this stuff from my infusion company called Skin Prep. Couldn't live without it. It creates a protective barrier on your skin. I'm also using Sorba View, not Tegaderm bandages. It took me awhile to get to this combo, but that's what's making my skin manageable through this. As for as the line being slow....could be a clot (I haven't had one so I wouldn't know for sure) or it could be a kink in the line (I've had that). If you can see where it goes in, make sure there's no kink in it (like a garden house) to keep it from flowing.

Anonymous said...

My name is David Moyer. I am the national sales manager at Centurion Medical Products. A local rep read your blog and asked if I could help some of the people with skin irritation issues. On top of some very serious health issues, I know the PICC lines are difficult to manage.

Centurion manufacturers the Sorbaview Shield and Winguard Securement devices to anchor and dress PICC lines. Both products secure the catheter and both are very easy on the skin. I would be happy to help out with proper prepping technique.

If anyone is having difficulty with the products they're using, I would be happy to help out in any way. Would be happy to send some free of charge with instructions.

Sorry to be intrusive but just thought I pass along the offer.
good luck, Dave

Quincy G. said...

I tried the DRY PRO! (even the water) but the humidity always makes it wet in the end, and then the adhesive peels off. What we've been doing is saran wrap, and waterproof tape, UNDER NEATH the dry pro.

love seeing other strong woman with PICCS.


Saw the picture of your picc line I also have one and let me tell you the first 2weeks were tough i had so may reactions to the dressings, iodine and the adhesive gel they used under the stat lock the nurses were at my home at least 4 times 1 day trying different types of bandages...I was seriously going to rip it out! But all that has calmed down now and I am adjusted.Rocepherin is just the beginning this Lyme SUCKS!