POZ Community Forums
Main Forums => Living With HIV => Topic started by: MitchMiller on October 27, 2007, 10:16:22 pm
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Friend that was in the kidney transplant study for HIV+ patients at Emory had a bad reaction to the anti-rejection drugs. He was doing pretty well up to about four months after the transplant... then he began having abdominal fluid retention problems... really bad. He spent nearly one month at Emory University hospital. They kept running all sorts of test saying they were trying to figure out the reason for the fluid retention before they finally relented and reduced the anti-rejection drugs. That cured the problem, but by then he was so weak (about 100 lbs, 5'9") that he had to be admitted to a rehab center. At that point, we "lost" him in the system. He ended up back at Emory for about three days then the state took control of his treatment decisions and put him in a nursing home. His status was unknown by all, including his family (out of state), for about three weeks. Finally his friend that was his health proxy got Emory to tell him what nursing home he was in.
So.. the short of this long story is that I went to see him today and he was hallucinating and making up all sorts of wild stories. He acts as if he has a blood infection. It seems like Medicare just wouldn't pay for his hospitalization and dumped him in the nursing home to die. He'll be lucky to last another six weeks.
Is this standard procedure? Is there some limit after which Medicare just refuses to pay? They have been quite generous since he probably racked up around $300K of medical bills starting with the transplant ($70K). Seems like such a tragedy since he was living quite well on his own before the transplant.
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Sorry to hear about your friend's problem but that is a worry. For those getting government help, does it ends or have a limit. Maybe the caseworker is not being responsible and just letting your friend go up the creek. All I can advise is to call medicad office and ask or maybe find an advocate for your friend to speak on his behave.
good luck.
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Mitch, I have never experienced, nor have I heard of Medicare having any "limit." It sounds like his health proxy and caseworker aren't doing their jobs. It almost sounds as if he needs some kind of legal intervention. How close are you to him? Can you do anything on your end? Maybe you could talk to his health proxy. I would definitely do something though, before things get more out of hand than they are now.
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Oh Mitch, that's just awful and I hope something can be done before it's too late. I wish I could do more, but I'll be sending some positive energy your way.
Hugs,
Ann
xxx
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I highly recomend your friend retain legal council as soon as possible .
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So.. the short of this long story is that I went to see him today and he was hallucinating and making up all sorts of wild stories. He acts as if he has a blood infection. It seems like Medicare just wouldn't pay for his hospitalization and dumped him in the nursing home to die. He'll be lucky to last another six weeks.
Is this standard procedure? Is there some limit after which Medicare just refuses to pay? They have been quite generous since he probably racked up around $300K of medical bills starting with the transplant ($70K). Seems like such a tragedy since he was living quite well on his own before the transplant.
Mitch--
Sounds like there is a lot going on with this guy. Hope he survives more than just six weeks.
Was he on Medicare, or Medicaid? These are two different public insurance programs that treat people and diseases differently from one other. Medicare is based on receiving SSDI, and covers hospital stays 100%, but lab tests and doctors visits 80%. Medicare doesn't cover nursing home stays. The other is Medicaid which is poverty-based and covers 100% of everything, all the time, including nursing homes.
Neither of these programs would require a hospital patient to be downgraded to a nursing home over a doctor's objection, under normal circumstances.
So, it could mean that something has gone medically bad for him, and they have moved him into hospice.
If not, and he is just receiving poor care, you should follow up closely with all involved to get him to where he needs to be. Be persistent. At the least, make sure they keep you better informed about his status and condition (and location). Hope this helps.
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Sorry to hear about what is happening to your friend. Here is the website for social security, maybe you can find some answers there...
www.ssa.gov/disability/
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Welll... I guess nobody realized how serious his condition was because he died today. Even the nurse at the Nursing Home thought he wasn't in immediate danger. He was found in his room in cardiac arrest. They didn't have any monitor so don't know how long he had been laying there, but he was sent to hospital and resusitated, but is probably brain dead... so the family will pull the plug when they arrive tomorrow.
I am wondering if he acquired MRSA... and perhaps that's why they just gave up on him... or maybe just wanted him out of Emory. There has been an outbreak of MRSA in high schools here in the Atlanta area.
He was on both Medicare and Medicaid. He was in a study for HIV+ to receive kidney transplants.
You always hear about the success stories of organ transplants. This opened my eyes to just how serious and complicated an organ transplant can be... both the surgery and taking the anti-rejection meds.
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Ah, that so sad. I'm so sorry to hear about the loss of your friend. You have my deepest sympathy.
Hugs,
mikie
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I am so very sorry to hear this sad and shocking news. I hope he can find peace now. Both of you will be in my thoughts.
Dan
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Sorry to hear about your friend, Mitch. It's a real shame.
My friend's aunt is in the hospital right now, seriously ill and mentally unstable; Medicare has told them OUT she must go on Monday.....so I suppose it's to some sort of nursing home or rehab facility for her.
The state of healthcare in this country is deplorable. For those of us on Medicare, it adds another layer of concern on top of all our health problems.
We are at their mercy, to a great extent. I hate that. It makes me angry and makes me sad.
Note to those of you still working and/or who have good health insurance, HANG ONTO IT with both hands and both feet.
Alan
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I am so sorry to hear about the loss of your friend. It leaves me feeling like since it happened to him, it could very well happen to me... :'(
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Mitch, I'm saddened to hear about your friend. I'd be really curious to see if it was caused by MRSA. That is one nasty bug.
And I agree with Alan, for those of you with good health coverage, for heaven's sake, don't give it up! Personally, it scares the hell out of me to think I am at someone else's mercy when it comes to my long-term health care.
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Thanks for the sympathy... it's appreciated.