Hi Everyone! I have posted before once or twice. I am new to Lymenet. I was just diagnosed with Lyme in May but have been sick for about 8 years.
I found a LLMD that a friend of mine saw and highly recommended. I am having a PICC line inserted on Thursday afternoon.
Anyone that has had a PICC line have any advice for me? Any ideas of what to expect? Any personal experiences you want to share that might help me?
Is it worth buying one of those waterproof sleeves to wear in the shower and to take my kids in the pool?
I will be on 2 grams (I think that is the dose) of Rocephin and 250mg Azithromycin every other day. Plus Ursodiol twice a day, Probiotics and Milk Thistle.
I haven't gotten my cos results yet so this could definitely change. I am almost positive I have Bart as well. Maybe Babs.
I must admit, I am VERY nervous. I think I am more terrified of the possibility of a bad herx than anything. Right now, I work, take care of my 2 children and do pretty much whatever I want to do. Just recently, my joint pain and leg pain has slowed me down a bit but I still am pretty active considering how sick I am. I am terrified that I will be stuck in bed...unable to do what I do now.
I just bought Cure Unknown so I will have some reading materials while I am getting my treatment in the doctors office (2 hours away) and in the car.
Any words of encouragement would be greatly appreciated. I know that I am not alone and I am so thankful for having found this forum. Thank You!
~Brooke
Posted by soleil16 (Member # 16326) on :
Hi Brooke,
Definitely get a waterproof sleeve for the shower. It is relatively cheap and so much easier than taping plastic bags to your arm. It may be difficult to swim... you want to keep your arm entirely dry and not even chance infection there.
I had my PICC line inserted on a Thursday morning and I went back to work after a few hours resting. My herx started about 10 days after starting Rocephin and I took two days off work because of how achey, feverish and flu-ish I felt.
At times it's been a lot to handle, but I also work and am still really active for how sick I am. I've gotten progressively worse over the last ten years. Sometimes I go home from work and go straight to bed, but then I'm able to get through the rest of the week by pacing myself.
Good luck with this. Hopefully it will be very effective for you and will really improve your ability to enjoy everything with your kids.
Posted by sammy (Member # 13952) on :
Hey Brooke,
The PICC insertion itself is pretty much painless, a little stick and that's it. My arm and chest were sore for several days. Warm compresses help relieve the pain.
I also had spasms in my arm for a couple weeks after insertion. Apparently this is not common in adults, almost got my line pulled because of it. Happens every now and then in kids. I figure it might be good for you to know just in case you experience this too.
You will want to baby the arm that has the PICC. Don't lift over 5 lbs. If you do too much you will be sore. It's hard to remember sometimes.
Definitely buy a PICC cover. Makes showering possible. I like showers Just try not to let the shower get too hot because then you will have condensation build up under the cover and your dressing will be wet anyways!
Keep the PICC area clean and dry. You don't want infection. Ask you infusion company or home care nurse to give you an extra dressing change set to keep on hand just in case. Teach a family member how to change the dressing.
You will probably get frustrated with having the PICC line, dressing, etc at some point. Resist the urge to pull it out! Sometimes I really hate it, I hate how it looks, I hate that it gets stuck under my clothes, and I hate how the dressing itches, etc. Remember that it is there for a purpose, to get you well.
One more thing, carry a plastic zip lock bag in your purse. That way if you get caught in the rain (without a jacket or umbrella, happens to me all the time) you can put your arm through the bag and keep your PICC dry.
Good luck:)
Posted by bncrump (Member # 20374) on :
Thank you so much for the reply!
I am sorry that you have been sick for so long. I know that it must be hard. How long have you or did you have your IV in?
I will definitely get a sleeve. Any recommendations on where to get on? Website?
I am a teacher and my summer vacation starts on Thursday so I will not have to worry about taking time off from work. I am more worried about being able to take care of the kids.
Were you able to get out of bed when you herxed? Did you choose to stay home because of feeling flu-ish?
I am sorry to ask so many questions. I don't know anyone that had IV treatment and I really don't know what to expect.
Thank you so much for your input...I really appreciate it!!!!
Posted by bncrump (Member # 20374) on :
Sammy ~ Oh wow! A ziplock bag for the rain. I would have never thought about that! Thank you so much for the tip!
See, I am so glad that I posted this. I would not have known about the extra dressing cover or taking showers that are too hot.
Thanks again for the tips! If you think of any others, please let me know!
Posted by pepperspeck (Member # 18837) on :
Good advice from everyone that will be helpful for you. I was one that did get major soreness and painful spasms.
I had 4 pic lines and after the first and the subsequent reaction, they recommended that I take tylenol prior to insertion. But of course, you should ask your Dr. prior to taking something like this.
The waterproof sleeve was a lifesaver, for showering as well as bathing my little ones (at the time!). In the summer, it allowed me to be near their kiddie pool and even participate in some water balloon battles without the fear of the dressing getting wet.
I do remember feeling like I wanted to pull it out early on. But then I quickly go used to it.
I remember keeping an empty bread bag in my purse to keep it dry in the event of rain.
All the best to you.
Posted by kimp (Member # 19339) on :
Check on protocol for PICC line stablization on your arm at your hospital. Ours used stitches, which Visiting Nurse took out immediately at home and replaced with a padded statlock, which was much nicer.
Also we called visiting nurse several times 1st few days. Make sure you have contact info for them and use it if having problems.
Good luck!
Posted by bncrump (Member # 20374) on :
Kimp~I don't think I am getting a visiting nurse! No one said anything about this. I think it would be nice though...I am over 2 hours away from the Dr and hospital that will be putting it in.
Does everyone have a visiting nurse?
I do have a very close friend that is familiar with PICC lines and is an in-home health nurse and was an EMT. I am sure she could help me if needed.
Thanks!
Posted by soleil16 (Member # 16326) on :
I didn't know anyone either and was super nervous. I've had my PICC since January 30, seems like forever now cause I'm so used to it. I was barely able to get out of bed the first herx- and for a while I felt so miserable 24/7 that I went to work and couldn't remember most days. Total auto pilot.
Just in the past three weeks, I've actually started to have a few improved days. It's really nice because emotionally it gets hard when you don't respond quickly to treatment.
I like the PICC line cover sold at medguard.net. It was sent along with my other supplies from the infusion company. It does cover your hand, so it would be difficult to help kids or really do much but shower. But it's really great at keeping water out.
One other thing that happened I think I should share- I developed a latex allergy from the dressing and stat lock. My arm was itchy and blistered and the skin peeled off. Almost had to have the line pulled.
If your arm starts to itch or is too uncomfortable, get it checked out. Change dressing brands. It would be nice to have your friend be able to help you for regular dressing changes or if you get worried and need some reassurance.
Posted by Blackstone (Member # 9453) on :
Buy the best waterproof sleeve you can get. Make sure you have someone to help with dressing changes. Make sure you're not sensitive to any of the dressings or the adhesives that attach them.
I found that Tegaderms were the best - they're somewhat expensive, totally sheer, translucent dressings with no cloth or tape bits. They adhere directly to the skin and I found the adhesive didn't bother me the way others did. I know they're more expensive than standard picc dressings though, but how much I'm not sure. I kinda swiped them from hospital supply closets hehe.
After the tegaderm is on to cover the entry point, don't be afraid to tack down a few smaller ones along the edges. Back when I did it, we didn't have a picc-cover so I did some wizardry with saran wrap and press-and-seal, but it was imperfect at best for a shower.
I had a difficult insertion. I'm not sure if its my heightened state of pain or what, but it hurt when they slid the "guide" in and out. The process went smoothly, but it was just painful for me. Most don't have this issue. I also had cramping and burning in the arm intermittently afterward.
Ensure that the line is always flushed with a heparin solution after it is used. This includes blood draws.
If you start having odd reactions after the line is used, come down with a fever or chills etc... contact your physician immediately. After several months (8?) of having the line in (including admittedly high risk behaviors like my daily showers), my line ended up getting septic and had to be removed.
It happens to a good amount of people who have picc lines for extended periods o time. They aren't really meant to be used the way lyme patients do. I'm not saying this to scare anyone, but its good to be aware that if you have a really unusual reaction after months of IVs or whatnot, it may not be a herx at all.
Hope your treatment goes well and you'll be on your way to getting better.
Posted by bettyg (Member # 6147) on :
brooke, best wishes to you xox; no experience ...
Posted by kimp (Member # 19339) on :
I would definately check on the home care. Ours was Nations Home Infusion and was coordinated thru the Dr's office. They came weekly and changed dressing and we did infusions in between.
We only did it for 4 weeks - allergic reaction to the dressing, that was also reported by someone else.
The IV's did help and finally saw improvement between 3 and 4 weeks. going with just orals now.
Posted by keltyl (Member # 14050) on :
I am going through the same thing as you. Am trying to figure this all out. It's getting mind boggling.
I'm taking in all the info you are being given and still have a million questions.
Good Luck!
Posted by Deb133 (Member # 18544) on :
My daughter has had her picc line in since 3/12. She has had absolutely no problems with it at all. When she showers we wrap it with Glad Press and Seal and have NEVER had a problem with water getting to the site. Actually, we wrap it twice.
The weekly dressing change should be done by a visiting nurse association which insurance usually will cover. The nurse comes weekly and does the dressing change and flushes the line with saline and heparin. She also does vitals and asks pertinent questions.
My daughter covers her dressing with a cut tube sock and we have even bought on line some of the colored equine or vet cohesive tape. This way she can color coordinate her outfits for school. (Teenage girl)
We hope to have the line out in a month as she has responded to the Rocephin so well. Our fingers are crossed.
P.S. The press and seal would only be used for showering NOT for swimming. She hasnt done any swimming yet. Of course be careful lifting that arm and use good common sense. This was much easier than we thought it would be.
At times she has wanted to yank it out herself because you do tire of it..but for the most part she has really tolerated it very well.
Good luck and feel free to email me if you have any other questions or concerns.
Deb G
Posted by bncrump (Member # 20374) on :
I just wanted to say thank you to everyone for the replies!
I am home and the PICC line is in. So far, so good. No problems to report. The insertion was painless. I couldn't believe how easy it was. My arm was a little sore for the next day but that was about it.
The treatments are going well so far. Nothing crazy to report. I get a little queezy after the Rocephin but not too bad. Better than when I was taking just Doxy.
I am not getting a visiting nurse. I have to travel back and forth to Philadelphia 2 or 3 times a week. They sent me home with everything that I need to do the treatments on my own. I feel comfortable doing them already...they are very easy to do.
So...now I am just sitting and waiting. Waiting for a herx or something. I haven't had too much to report symptom wise. My muscle twitching is a lot more active now. My rash on my hands itches worse than ever and I am super tired. But, other than that...nothing too bad. My joints actually feel a little bit better.
Thank you again for all over your advice. I got a waterproof cast cover at CVS. It works just fine. Obviously, I am going to try to find something a little less bulky for the summer because I plan on going to the beach a few times. The DR just said I have to keep it clean and dry and no swimming.
![[Smile]](smile.gif)
Just try not to let the shower get too hot because then you will have condensation build up under the cover and your dressing will be wet anyways!![[Big Grin]](biggrin.gif)