Just read this excellent article on dialysis and Medicare. I will have to take the time to dig into statistics they used for the article. I usually delve into dialysis center stats when I have the time-- being a librarian, certainly helps with that research!
I'm concerned that if we dismantle Medicare that many of us dialysis patients will die, from lack of care. I know the program is imperfect-- but what are the alternatives? I would like to see more competition from non-profit dialysis centers-- but under the current payer system, I don't know how competition is possible. I really admire all that Satellite Healthcare has accomplished, and by, and large, I feel that I have received competent care from Satellite. But I worry about other patients-- how can we improve care-- especially given the current economic and social climate?
Tuesday, November 9, 2010
Thanks, Texas Transplant Institute. In spite of having a living donor, you won't approve me for a living donor transplant. A cadaver transplant it is, I guess. The outcomes aren't as good-- they don't last as long. I know I'm a risky patient, but you're saying I'm not worth the risk for a living transplant.That's what I just posted on my FB page. Yeah, I put that out there, because it's the truth. I'm kinda pissed that TTI has decided this way-- even though, I was leaning in that direction on my own. I guess I wanted to keep all my options open. While receiving a deceased donor kidney is a gift of life, it is, most likely, not the best gift I could get. Sure, I received a living donor transplant from my son a few years ago-- and that didn't work. But we didn't know then, what we know now-- we know the cause of my kidney disease, and we could try different treatments to mitigate problems.
It doesn't look like that's going to happen. I'm not happy about having to hold my breath indefinitely while I wait for a cadaver transplant. I do have time in on the donation list, but it's a waiting game-- and I don't like having my life on hold, any longer. And of course, the longer I'm on dialysis, the sicker I get, and the less likely I will be healthy enough for a transplant, when and if, the call comes.
I'm seriously considering home dialysis again-- even with all the disappointments I had with that in the past. I hated not being able to escape dialysis, because the equipment overtook almost every room in my house. I hated having to hook myself up, run and unhook myself, every evening after work-- and at least one weekend day. It seemed like my entire life was work and dialysis-- but really, I guess life is reduced to that-- no matter what modality you use.
Well, at least in the past I had work AND dialysis. With my move to Texas, and the lack of jobs in my field, I don't even have work, these days. But even if I did, it would be nearly impossible to work around my current dialysis schedule. Nocturnal dialysis made work easier-- but not necessarily, easy! I mean, I would spend all night in a dialysis chair, barely sleeping more than a couple of hours, and then I would have to get up and go to work on that couple of hours of sleep. Rinse, repeat, rinse, repeat.
Ok, death-- not so good. But a life on dialysis-- regardless of whatever kind--whenever it is-- also not so good! I wanted to have more options. I want to live-- REALLY LIVE. I am alive, right now-- but I am not living. This has to change-- Texas Transplant Institute, be damned.