posted
I know for some people this is an absurd question, but we all have our own experiences and concerns with Lyme. This is one of mine...
I'm considering going on IV after 11 months of little to moderate improvement on orals. However, I'm really hesitant due to the lifestyle limitations it may bring.
Though less active than I was before getting sick I still work as a running coach 4 nights a week and get out for a run or a bike ride on others. My LLMD says that if I feel up to it I can continue with this activity, but then he tells me that I can't get the PICC sweaty. Whaa?
So what's the real deal with the PICC? I know you have to keep it clean, clean, clean and that I'll probably herx my head off and not really feel like being out and active, but what if I can? Were any of you who are able to exercise with your PICC in?
I know many of you who are housebound or suffer extreme fatigue must be rolling your eyes at this question, but it's important to me and I'd really appreciate any feedback.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
When I had my PICC it was my 1st step in treatment. I was well enough then to do my elliptical trainer and I did 40 minute workouts and sweated.
I kept blotting my dressing with a clean white cloth. The dressing is breathable. I had no problems.
I was told that this was fine to do, but I had to give up the weights.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Actually this is a really good question. Lyme already affects life enough, so it's great to know what you're getting yourself into before adding another layer of complication.
I'm not housebound (still working) but not exercising to the same extent as you either. I still do gentle yoga in my living room and some crunches on my exercise ball, but I would be a little hesitant to really sweat with the PICC. Even though the dressing can breathe, I'd be really nervous about infection around that area.
Also, my herxes on Rocephin (not sure if that's where you'd start) give me such bad joint and muscle pain that I can barely walk up the stairs to my apartment. Even the thought of running makes my bones ache.
Posts: 236 | From Washington | Registered: Jul 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I've been wondering about this too since I just got one. I was told that they're pretty hardy, ie, the doc who put it in said there's not too many problems with them.
Maybe go easy at first to see how it goes with the sweat?
Posts: 3528 | From US | Registered: Apr 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I wouldn't think that you can do that kind of exercise because it will get sweaty. You have to
keep the opening of where the picc goes in clean and dry and covered. If it gets wet or sweaty this
can lead to serious life threatening infection.
When I had mine, the nurse would change the dressing once a week. If for some reason it got wet in the shower or something, I had to call her to come and change the dressing.
It does not seem advisable to me to exercise to that degree, that would cause that kind of sweating.
You also have to keep it covered, wrapped in saran wrap or use a picc line sleeve when showering.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
They are not that hardy. Don't do any arm workouts. You aren't even supposed to lift more than 10 lbs. And I wouldn't do Yoga that involves arms either, that thing is going into your heart. I would give it respect for the months you are on it.
My clavicle pinched mine off after my arm ended up over my head while skiing, had to get a new one.
But I wrapped mine tight when I was working out and had no problem with the dressing.
Posts: 243 | From chicago | Registered: Dec 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Perhaps you want to get a PORT instead.
Posts: 2276 | From united states | Registered: Jun 2004
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-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
You will be a happier camper if you get a Dry-Pro PICC line cover. Then you can go in the shower or swimming and keep your line dry. My daughter used it while she was on IV and it made all the difference in daily liveability! They're about $33 or so.
Posts: 245 | From Tickafornia | Registered: Apr 2003
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Orion,
Swimming? You can swim with a PICC with the cover?? When I swim I like to swim for 40 minutes straight (used to anyway!). Is that possible with a PICC line cover?
I am going to do IV soon, and have been weighing the options of PICC vs Port in terms of ease of swimming, showering, doing bodywork, being vaguely active (even carrying groceries and doing housework). I sweat a lot, even without exercising, so that is a concern, too.
Where do you get the cover? Thank you.
Posts: 3771 | From around | Registered: Mar 2008
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I hadn't considered a port. While it seems like less hassle in the long term, short term it seems like overkill. Can you still do everything yourself with the port? That's the attraction to the PICC... I can do all the infusions myself.
I guess the real answer is to just suck it up, take it easy and do the PICC for 3-6mos. After that, according to my LLMD, I'll be back to being as active as I wanna be. I'm skeptical, but maintain hope that he's right.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I've seen people with PORTs, they stay in a long time.
You're so athletic--I think you might want to ask about a PORT. Think about your lifestyle and how important is to you. There is also something called a Groshong Catheter that one nurse (male) on here told me he thought was much safer than a Picc.
I think you would have to be ruthlessly careful about your Picc, that's all. Be very diligent about keeping it clean. My ex hyperbaric doc has had a picc in for a year but she is superb at aseptic technique. I've read horror stories of folks going septic with piccs--you can die from sepsis--but even if you get rushed to the hospital in time its dangerous, with very high fevers, shaking chills, and precipitous drops in blood pressure.
Also---surely you have coinfections. We all do.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I was able to do yoga, biking, fast walking...but I did find that if I overdid it and sweat that I would develop a rash around the PICC bandage which would scab up and was not worth it. I also found that weight bearing exercise on my arm (esp. yoga) would cause the PICC line to twist and would make it difficult to do the infusions later. Also...not worth it. What was totally worth it: the PICC. Definitely worth taking the sidelines for a few months to get your life back.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
From the description of your acivity level, I would say that a port sounds like the better option. You would still need to take about a week off training while the port incision heals, but after that the port will offer much more freedom for activity than the PICC.
You sound like an athlete with a high fitness level - if that is the case disrupting training for 6 months can have really lasting effects. I am not discounting how sick Lyme can make you, but if you can more forward without giving up the things that are important to you, that is the right choice to make.
You may want to really discuss your activity with your MD or radiologist that places the PICC/port. If you enjoy a run once in a while and like to coach a bit on the side, a port will probably not be too much problem. If you remember your 5K pace since forever, worry about your lactate threshold and think about new 5 dot patterns in your spare time, then an indwelling cathether (PICC or port) may be a risk - be honest with your MD.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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posted
I run 8 km every evening and do 100 sit ups after that. I miss lifting weights though. I don't do any weight baring exercises at all with the line in.
I also started Thai chi twice a week at home. I find I sweat far more doing the thai chi than jogging.
I try keep the sweating to a minimum.
So far so good. Cycling is fine too if you have the weather for it.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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In the movie, Under Our Skin, Mandy uses a port and she gives herself her own infusions so it looks like you are able to do that with a port also.
Posts: 686 | From Northeast Georgia | Registered: Sep 2005
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posted
Everyone, Thanks so much for your helpful replies. It seems that what I want to do is doable with a PICC, but that a port might be better for me. I see Dr. R in Manhattan and I'll ask him about it when we talk in a week or so.
One last question... do the insurance companies generally care which you do? Since a port is somewhat more invasive I assume it cost more.
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