posted
I've been putting this off for months but have finally decided to get a PICC line. This Mon., 8/17.
However, I'm having a lot of trouble reaching my LLMD or the other medical people involved. (The infusion company complained to me that they can't reach my LLMD, either!)
Any answers to any of these questions most appreciated!
I get it inserted in radiology at the hospital, and then I'm supposed to get the first infusion somewhere in the hosp, but nobody seems to know who is doing it!
Then, the infusion co., provides the Rocephin, but they don't do the infusions -- a VNA does.
I'm still calling all over, and everyone tells me to ask someone else. I need to talk to all these places and explain that I have MCS and find out what products are used to make it as nontoxic as possible, but I can't reach anyone.
So, what's involved? What does the infusion co. do? What does the VNA do?
Also, I keep hearing from other Lymies that I should get all my own "supplies" ahead of time (because insurance doesn't pay), but I have NO IDEA what these supplies are!
Can someone please give me specifics? Adhesives? What brand of plastic wrap? (I've heard some kinds are good and some are bad, but don't know which.) Sterile gauze pads? If so, what size?
Isn't there some sort of "fake skin" you're supposed to get? What's that called, and where do you get it?
What else do I need?
Also, I have Medicare and Medicaid. Usually that covers everything. Does anyone know which supplies aren't covered, and I have to find them myself?
Also, if anyone knows about hypoallergenic versions of any of the above, much appreciated!
Lastly, what can or can't I do with a PICC in? I know I can't go in the water or get it wet in any way, but are there other things?
I use a power wheelchair, and live in a very rural area -- dirt roads, I go bouncing around in my chair in the roads and on woods trails, etc. Is this going to be a problem?
What are the chances of me accidentally yanking it out in my sleep or if I whip around a corner and get it caught on my armrest, etc.?
I'm so anxious about this. I had a cardiac event monitor, and I couldn't wear it me because even the hypoallergenic adhesive electrodes gave me welts and rashes, and the device itself was too smelly. I had to triple bag it, zipped in my purse.
Then, when I had an event, I would take it all out, attach it, and try to "catch" the event. It took weeks for the marks to heal on my skin from the electrodes.
I just don't know how I'm going to deal with having something in and on me for weeks or months or years. . . .
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If it were me, I would get everything answered before I had the line put in. I would postpone it until i had everything in order.
You should speak to your LLMD and let him know the infusion company is trying to reach him. All of this confusion is giving you great stress which is the last thing you need.
You waited this long so another week or two probably won't make that much difference. Hope you get things sorted out,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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The problem is that I have to schedule it around my dog's chemotherapy schedule, which is difficult, because he had a delay due to low blood counts.
So, I already had to have my LLMD's nurse reschedule it once before.
And she said, when I picked the new date, "OK, but this has to be written in stone now, because there are so many parts to coordinate."
So I feel obligated to go with that date.
However, I also recently found out my LLMD will be away next week, so if there are problems, I won't be able to reach to work it out. I'm trying to get an appt to talk to her this week.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
I don't know what Medicare and Medicaid typically cover when it comes to IV ( I am on group health ins myself), but normally, the supplies necessary to maintain your PICC and do your infusions ARE covered by insurance.
I have chosen to get my own supplies at times in the past simply because it was cheaper than paying the amount of coinsurance my policy had me paying, but whenever my ins paid for my IVs, that included the costs associated with the care of the PICC.
The VNA will be the home health care company in your case, and they should be doing your dressing changes for you (and providing the supplies to do it), as well as monitoring your PICC for signs of infection.
Typically, the home health care company also is with you for your first in home infusion, and stays with you throughout the time it takes to complete it, and trains you in how to do the infusions so that you will know what to do once you are on your own.
If I were you, I would not attempt to buy my own supplies until you see how the system works, and also what types of dressings, tape, etc, work best for you.
Often, it is a requirement of your insurance company that you keep home health care involved if they are paying for the IVs, for liability purposes. If that turns out to be true in your case, you may never need to buy supplies.
FYI, if you ever did find yourself in the position where you're buying your own supplies, medical supply companies stock sterile dressing change kits that contain all the necessary items for a single dressing change, including that so-called "fake skin" to cover your PICC site. That makes choosing the correct supplies a lot less daunting!
Posts: 962 | From Charleston | Registered: Jan 2002
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WildCondor
Unregistered
posted
Research all of this! You can probably find the answers here in search. Ask your LLMD to call you and explain and ask these questions. The test dose of the antibiotic is normal, we all have to do that at first to make sure we aren't allergic to it. The PICC is secured to your arm with a tegaderm or tape at all times. The nurse etc, should show you how to take care of it and shower with it. Good luck!
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posted
hi sharon i had a nurse come to my house and do mine' it was really uneventful. i had the abx delivered to me evedry 5 days and i just hooked it into the line after putting water in first.
reALLY IS NO BIG DEAL. as said before, you can buy a cover for the shower as you don't want to get it wet. i actually bought 2 covers and went into the ocean with it though i was nervous but it stayed dry(i have young kids).
also you can cut the top of a tube sock and use that to cover it most of the time.
the nurse should come once a week and check and chage the dressing.
i use my arm alot so i bleed a little more than usual but still it was not a big deal so don't get worried if you see some blood. good luck bob
-------------------- rjf Posts: 62 | From pt pleasant nj | Registered: May 2009
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