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» LymeNet Flash » Questions and Discussion » Medical Questions » Thinking about starting IV - would love advice from others with IV

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Author Topic: Thinking about starting IV - would love advice from others with IV
AnnaL
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When I see my LLMD later this month, we are going to discuss the possibility of me going on IV abx.

I understand most of the medical cost/benefit analysis.

But what I don't know is what it's like to actually live with a PICC line on a day-to-day basis. Is it painful? Uncomfortable?

Does it limit your range of motion? Activities?

What changes have you had to make in your life as a result?

And, of course, what advice would you give someone who was going to go on IV abx?

Thank you so much!

-AnnaL

P.S. Background: It's been over a year since I started treatment. Got rid of bartonella, now focusing on Lyme. Over 6 months of Bicillin with little improvement. Currently taking IM Bicillin, Biaxin, and Diflucan. Will likely replace Diflucan with Flagyl in a couple of weeks.

Major symptoms: Central nervous system--neuro/cognitive stuff. Extreme fatigue and malaise.

Posts: 398 | From By the Salish Sea | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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hi anna,

i'll send you a PM for a caring bridge site of one of our members, TDTID, cathy, who has detaield info on her PORT. many lyme patients have caring bridge sites for their family/friends to read the latest on their lyme journeys.


there are MANY PICC posts in GENERAL SUPPORT, so go there and read down thru the posts; then go to next screen, etc.

you'll learn alot.

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soleil16
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Hi Anna,

I'll just toss out lots of info that I remember from my PICC experience. I had my PICC January- July. I got used to it very quickly, within 4-5 days. I still noticed it was there, but I got used to doing infusions and keeping it out of the way.

My arm took about 4 weeks to feel better after insertion, but I understand that is a very long healing time. But just to give you an idea, I had my PICC placed at 9AM, went home until 1PM and then went to work for the rest of the day.

As far as limiting your activity, you'll need to be careful to not lift too much. They say 5-10 lbs max, but I was very careful to not carry much- maybe a very light bag of groceries.

You'll need to make sure you have good protection for bathing. Exercise and swimming can be a great challenge. I wasn't able to do yoga or traditional exercises because you need to be careful about the dressing getting wet. Also, I could feel a pinch in my chest if I moved my arm around too much, making yoga uncomfortable. I did easy, slow exercise at home on a large medicine ball.

I wore long sleeves every day with my PICC, and I had a stocking covering the dressing as well. I'm still working, so I had to dress professionally, but some suits are not made to fit over an arm with a PICC. So dressing was a little difficult.

Rearranging my daily routine was also necessary- I needed an extra 45 minutes to set up all my supplies and do the infusion. My husband and I agreed that infusions come first- if we were late to something as a result, so be it. If dinner was late, oh well. Infusions trumped all.

My nurse came out once a week to change the dressing and draw blood. She was a real sweetheart- she was diagnosed with lupus long ago and realizes how difficult chronic illness can be. Make sure you trust your nurse- mine was an absolute blessing and helped keep me sane.

After a while, you get used to the PICC. It's just like anything else in life that becomes routine. It's still a big deal- mentally, it was rough for me- but you get comfortable with it.

Wow, that's long- hope it helps, and as Betty suggested, check out old posts as well because there is some very good information to be found from everyone else's experiences, too. Good luck, let us know what you decide!

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coltman
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quote:

As far as limiting your activity, you'll need to be careful to not lift too much. They say 5-10 lbs max, but I was very careful to not carry much- maybe a very light bag of groceries.

I wasn't able to do yoga or traditional exercises because you need to be careful about the dressing getting wet.

Confused....Hmm so can you exercise with it or not? why would you worry about it getting wet while doing yoga or such?
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soleil16
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Well, I did crunches on a medicine ball and went for some walks, and I did some leg lifting exercises at home, but I never did make it to the gym. I have never been able to sweat, but suddenly, after starting Rocephin, I would sweat like crazy even in the air conditioning.

You really really don't want to get an infection around the entry point- and my arm already was extremely tender from second degree burns caused by an adhesive allergy. Sweating will just get bacteria under the dressing. Not something I wanted to chance- in fact, I was paranoid. It's not that you CAN'T exercise, just be so so careful if you do. You don't want a skin infection that can get in your blood and cause sepsis.

Of course, this is the doomsday scenario, but once my PICC was in, I wanted to keep it and get every benefit from it that I could! If you do sweat, make sure you change the dressing to keep everything clean.

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AnnaL
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This is good to know. Since getting sick, I tend to sweat *a lot*--even when I'm just walking around the house.

I am starting a "yoga for chronic illness" class this week, so I'm hoping I can develop a practice that will accomodate both my current physical state and my possible future PICC.

Having had a variety of piercings and tattoos, I'm of the very cautious school: don't do anything that could mess it up! [Smile]

Also good to know about the lifting heavy stuff limitation. I will need to find a way to accomodate this. Guess my husband will have to do all the heavy lifting from now on! Ha ha ha!

Oh, another question I had-- What is travel like with a PICC? Is flying harder? (I'm thinking of the germ-filled plane cabin.) I don't travel much anymore, but am just curious.

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soleil16
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We did a weekend trip to a family reunion. I put all my IV supplies in one carry-on and went through the special line for people with medical supplies. Carry all supplies with prescriptions and with original labels with your name. No problems for me- they were more interested in my small makeup bag then my IV supplies!

I took hand sanitizer and didn't touch anything. Too many germs even for healthy people, so I don't really know what you should do. Our flight was only an hour and a half. I wiped the tray table and arm rests with antibacterial wipes and sat by the window with my husband in the middle so I wouldn't have anyone else breathing directly on me.

Made sure that I had time to do infusion before flying and plenty of time once we arrived. Infusing on the plane would be... well, I don't know... maybe not even possible?

I couldn't fit my IV pole in any bag, so I put a hanger on a curtain rod and attached the IV bag to do my infusions.

Have fun taking a little break from any heavy lifting... I really enjoyed the few months when my husband would carry all our groceries upstairs for me : )

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Melanie Reber
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Are you sure the Bart is gone? You may want to consider doing a round of IV Levaquin just to be certain. When I see others presenting mainly with CNS and Cognitive irritation, the first thing that comes to mind is a possible Bart issue.

I did IV for 15 months, but with a Hickman instead of a PICC. If given the opportunity, I would do it again in a heartbeat.

The very best of luck to you in this new adventure Miss Anna! M

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AnnaL
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Melanie--

I'm pretty sure the bart is gone. I think the sweating is caused, in part, by the combination of meds I'm on.

The bart sweats were different--hot flashes, night sweats, etc. I am so glad that they're gone!

Posts: 398 | From By the Salish Sea | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
   

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