Topic: Help. Need more nursing visits than are covered. Out of options.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I have been trying unsuccessfully to resolve this issue for a long time. I am receiving IVIG for two days every other week with a home health nurse.
I also have a port that needs to be re-accessed and needs a dressing change once a week.
Next year, I have only 60 home nursing visit allowed per year, which would cover the IVIG, but only 8 of the port care visits.
I asked the LLMD if I could have the IVIG once a week instead, so that the port care could be covered, too. He said, "No, it has to be given the way it is supposed to be given."
I said what the problem was, and his only suggestion was to have a nurse do me a favor. But that's every week for a year!! Or at the least every other week, if they do a favor during the IVIG.
I have tried calling multiple departments at a hospital, a cancer center, etc., but they won't even return my calls (I explained what I needed).
I would try the surgeon's office, but their protocol is to change it every 72 hours, which isn't practical! Plus, it's a long trip away.
My current IV nurse had originally offered to help, but he has turned into a nightmare: won't wear gloves or wash his hands before flushing me without my demanding it, always mad at me for speaking up about this stuff, etc. This problem is the ONLY reason I haven't fired him long ago. But this isn't going to work.
Now what?? The problems are so endless and difficult I feel like cashing it in. Not saying that I will, but I'm at that point where I just can't deal with all the continual problems. I am fighting multiple battles all around every day with the LLMD's, the pharmacy, the IV nurse, the insurance.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Well first things first, your current IV nurse has to go and immediately. He gets mad at you??? He won't wear gloves or wash his hands??? Pfft...Bye is what YOU have to say.
This nurse has to go and go ASAP. The agency that sent him to you needs to know what is going on and you have the right to demand that someone else be assigned to you. It is YOUR insurance that is paying right?
Or is someone in lymeworld doing you such a big favor that you have to put up with this crap? Guessing not.
Yeah, the problems are endless and difficult. So many of us here continue to fight the docs, pharmacies, insurance, nurses who have been assigned to our care. And not just once or twice. So many have been through this crap time and time again.
Don't let a few a--holes get you to the point where you want to cash in. The payback isn't worth it--there is no payback in fact.
Hang in there and hold on. I'll pull you back up...grab onto my hand.
Let's go through everything you posted. But tomorrow because I am so freaking tired right now.
In the meantime, please keep the faith.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
where are you Rumi? If you're in N. California, I might have a suggestion for you.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
Can a family member or friend be trained to do the dsg. changes?
My husband was trained and now the nurse only comes one time every two weeks for bld. draws.
I had 24 visits covered and I was allergic to the dsg, so my visits were being eaten up by dressing changes every 3 days.
By my husband approved to change the dsg. It helps extend the nursing visits.
I understand all insurance rules are different but this is what has helped us.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, guys! Michael, no, I'm not in Northern CA.
TS96, my husband did the dressing changes last year when I had a PICC line and I had this problem. But now I have a port, and the needle needs to be changed, which is much more difficult. He doesn't want to do it. I have a lot of difficulty even trying to remove the needle myself (it's pretty hard, as it's stuck hard into the silcone port, which is inside my chest).
I guess if we have to, he will have to learn and do it, but he's also at the breaking point, as he's having to earn all the money, pay the bills, and do most of the household chores, as I can't do much of anything these days.
I will have to try again at cancer centers, etc., but they would never even return my calls before, after many, many calls.
And now I just found out that my insurance has denied anything beyond 28 days of ceftriaxone. That's not a surprise, really, but I was hoping maybe they would cover a second 28 days, considering my peripheral neuropathy, etc. But no. Now I have to self-pay again.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Any support groups near you? Maybe someone who has lyme and some experience could do this for you?
Posts: 8430 | From Not available | Registered: Oct 2000
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm a co-leader in our big local support group. I don't think so, but I do know one nurse---don't think she does port care, however.
The good update is that I called the nursing agency and fired the IV nurse who had gone south. (He'd been fabulous in the beginning, so I was trying to salvage it, but to no avail). We'll see how the nurses are that they send instead (will have one for each day, as it's short notice to find an IVIG nurse).
AlanaSuzanne, thank you for your encouragement! I usually have no problem speaking up (and I have been speaking up!), but this issue was complicated). However, it was a total no-go at this point. Now I have to make sure that any nurses they send are up to snuff! Whew, my job is also nurse policewoman!
Posts: 3771 | From around | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Rumigirl, I'm sorry to hear that you've been having such a hard time. I can't help but wonder if we would all get better faster if we didn't constantly have to deal with the stress of insurance denials, high out of pocket cost of treatments, difficulty finding health care providers willing to help, etc...
I hope that your new nurse provides excellent care so that you have one less worry. And if you like this new nurse you could ask the agency how much it would cost to pay out of pocket for once weekly dressing change visits. They usually charge less than what they would bill your insurance company.
*Hugs*
Posts: 5237 | From here | Registered: Nov 2007
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posted
Hi again, I agree with Sammy...you might be better off dealing directly with the agency (or the nurse her/himself) out of pocket.
The picc is easier than the port to deal with. And I found the picc to be hard enough. Can't blame your hubby for not wanting to do it. I can understand him being at the breaking point.
My husband is at that point and he hasn't had to be hands-on with ports/piccs. But he is the one busting his butt to pay for everything and dealing with the stress of all the bills.
Sorry to hear that the ins will only cover 28 days. Not a surprise, I know, but still very frustrating. FWIW, Infuserve was the most reasonable for us.
Good to hear that you don't have a problem speaking up (kinda had that impression of you) and got rid of that IV nurse.
And, yes, you are a nurse policewoman! Sounds like that should be a career path.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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