Thursday, December 9, 2010

Mortality higher in large chain dialysis clinics-- who knew?

Here's a link to an article that discusses the results of a study measuring mortality in dialysis patients, according to the type of center (large chain, for profit, non-profit...etc). I'm going to have to look at the details of the study, because I want to know how Davita and Satellite fared in the study-- though I can guess at the outcomes from those two. They are like night and day.

I also wouldn't be surprised to find out that small for-profit center kill off more patients. I speak from experience. Ok, well, I wasn't killed off-- but gee, there were some questionable practices at the private, for-profit center where I first received dialysis. Things were so bad at that center that it's a wonder I decided to continue on with dialysis (I did decide to switch centers after three months, so that I could do home dialysis).'s the link to the article--

Thursday, December 2, 2010

The Waiting Game

So, I finally got word that my wait time on the deceased donor transplant list in California had been transferred to a program in Texas. I'm happy about that-- though I was ticked off that I wasn't deemed suitable for a living donor transplant. The good thing is that I have over 3 years in, and the list is about 4 years long. It means that I have to be ready at a moment's notice to hit the road and get a kidney. I should have a pair of clean underwear always on the ready, just in case, hehehe

Not like I'm going to be wearing that clean underwear in the hospital. Nosiree bob! I'll be wearing one of those classic ass-exposing hospital gowns-- and wearing a catheter-- ouch! It will all be worth it,though, if I get a working kidney.

Now the question is, what kind of dialysis should I continue to do to keep myself fit for a transplant. Right now I'm doing 4-hour treatments in-center, 3 days a week. I'm very tempted to do the NxStage again, at night, at home. Though, I didn't really like the NxStage when I used it before. Well, I didn't like the PureFlow system, or whatever they call their water treatment system. And I'm not exactly sure that the water at my new house in Texas is suitable for home dialysis-- it's really "hard" well water. I didn't like having 35 NxStage boxes of supplies covering every square foot of floor space in my house-- but luckily, I've moved to a place twice as large and could find the space-- if I had to. It was rough on my partner-at-the-time-- my son. And I'd have to start cannulating myself again, and that's um, doable-- but icky!

I really wish the Austin area Satellite Dialysis units offered nocturnal dialysis. I really don't want to return to Davita right now. It's great that there are alternatives for dialysis, but none of them fit me just right. Well, hopefully, I'll get a transplant and won't need dialysis (at least for a while).

We'll see.

In the meantime, I will keep up my conventional dialysis. I can work that around my new independent Passion Parties business-- though, I better get on setting a visiting patient visit for Las Vegas in February because I definitely want to go to the Passion Parties convention. Hmmm, wonder if Las Vegas has any nocturnal dialysis slots....

Nitey nite...Treasure/Michelle

Tuesday, November 9, 2010

Excellent article on dialysis-- especially on Medicare costs and services

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?

No transplant for you!

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.

Thursday, September 30, 2010

The difference is night and day

So, I have made the switch back from nocturnal dialysis to in-center dialysis Monday, Wednesday and Friday afternoons. I do miss how great I felt on nocturnal-- but I don't miss NOT SLEEPING. I just couldn't get the hang of sleeping all night in a dialysis chair. I couldn't get comfortable in the dialysis chair-- not enough to sleep through the night, and I couldn't take sleeping pills, because I would wake up too groggy to drive home in the morning.

Yeah, I was doing nocturnal when I first arrived in Austin, at a Davita facility in South Austin. But, I never felt very secure there. The unit was too noisy and too many patients had to be transported to the hospital on the nocturnal shift. Even though studies suggest that nocturnal patients may live longer-- I wasn't convinced that I would live longer at that facility.

My current in-center dialysis is once again in a Satellite Healthcare center. I know the Medical Director of Satellite Corporate...and she really gets me-- the kind of strange, wacky dialysis patient I am. In spite of how busy she is with her new position, she takes the time to respond to emails regarding my concerns about my treatment. I have been bugging her for months to go ahead and establish a nocturnal program for Satellite Healthcare in the Austin area, and I have no doubt that it will happen. The question is whether or not it will happen before I get another kidney transplant-- for I am surely working things from that end.

You know, I'm sure there are some dialysis staffers that think I'm a big old spoiled bitch-- who's never happy with her dialysis care. I would posit that that is not it-- I just believe in the power of asking for what you want. I have requested different times, different days, sdifferent chairs, different doctors-- and I have almost always gotten what I asked. I didn't demand...I just asked. I think that's the difference between me and a lot of other dialysis patients-- they don't make their desires known. Now, I will go as far to say that a dialysis unit would have a very unhappy Michelle on their hands if they didn't grant my requests-- but really, though, no manipulation is necessary, no pleading, etc. Start out with asking, and see where things go from there.

Patients! Get in the habit of letting your desires be known. Speak up!

And, Dialysis Doctors, Nurses and Techs-- Listen, without getting all bent out of shape!

All for now, and nitey nite...


Tuesday, August 31, 2010

Ok, I'm REALLY not cut out for Davita

Greetings! I am properly festooned in my new house-- which happens to be about 50 minutes away from the Davita clinic where I've been doing nocturnal dialysis. This is a much shorter trip than the 2 hours I used to do in California in order to do nocturnal dialysis at the Satellite Healthcare ( it was definitely worth the 2 hour drive each way!).

Oh, Davita, Davita, I have tried not to hate you-- to not be swayed by all the terrible things patients and employees (both current and former) have said about you. Sure, most of the people working at the Davita clinic I've been going to are nice. But nice does not equal competent...and sometimes the nicest people can be the most annoying.

I've had a little bit of dialysis drama the past few days. I had asked to be switched to an earlier time temporarily, so I could attend my father's 84th birthday celebration. I asked about two weeks in advance, and wanted to do a 3-hour treatment earlier that day so I could I hit the road after dialysis and drive the 3 hours to my parentals' place. I know it can be a bitch to have to switch around patients, but I thought I had asked in enough time to make it happen. I understood that the transfer was contingent on some patient being stuck in the hospital (or worse, dying, ugh!)

It appeared that all systems were "go" a few days ahead of the change. I made my plans to drive up to Fort Worth...but then two days before, I was told that the open spot was no longer open. So I rearranged my visit to Fort Worth and planned to leave the birthday party early and drive back that night and get as much dialysis as possible before the end of the shift.

So, I drove up to Fort Worth, celebrated with Daddy (yay, Daddy!), and drove back like a demon last night. I called the dialysis center from the road, and said I'd try to make it in within a couple of hours. Unfortunately, I had to drop off hubby and doggle at home before heading to the dialysis I was about 45 minutes later than I had expected.

Well, I found out when I had arrived that the Davita Center had already pulled my dialyzer and refused to start the machine up again unless I was willing to have an one-hour treatment. That wasn't going to work, so I yelled at the nurse and left. (I know, I know, bad form).

I know I was late, in spite of good intentions. But they knew I was on my way there, that I was driving in from Fort Worth because they couldn't give me the slot they originally had arranged. Furthermore, they should have called me and said, hey, we're going to yank your machine now-- don't bother driving an hour out of your way to come in at 2am. That was, obviously, too much to expect from Davita.

And I don't feel like it's an absolutely unreasonable expectation-- because Satellite Healthcare always found a way to make things happen for me. And not just for me, but other patients, as well. It seems it was a usual practice of theirs to keep a seat open for scheduling contingencies, visitors, etc. I guess they don't do that at Davita. I tell ya, trying to get the time changed with Davita was very aggravating. I kept having to repeatedly explain to the nurse when I needed to be in Fort Worth and when I would be back in town. She kept coming to me with impossible scenarios-- I just don't get it. Said nurse is a very nice person-- but it's like she really doesn't pay attention to what you say (another example: I shouldn't have to tell her every treatment that I can't take clonidine for my BP because it makes me comatose).

So after the latest drama, I began to consider whether or not I should stay at Davita. The fact that 4 patients have had to be transported to the hospital in a six week period-- not a point in Davita's favor. That the patients still have their tv blaring all night-- that's a second strike. That the techs like to sit in the dialysis chairs and watch tv during the night shift-- not good, not good. That there was negligence one night when I received air with the return of my blood-- and the nurse tried to play it off-- that's the biggest no-no. That's enough for me.

I contacted Satellite Dialysis in Round Rock today to arrange a transfer. I hope it comes through quickly and I can be on my merry away-- away from Davita. I will have to return to daytime 3-hour treatments-- and that's not the very best for me. But I'd take the shorter, life-shortening treatment over all night with Davita-- and that's saying a lot.

I'm going to keep this blog up, because I hope that Satellite Healthcare will get a nocturnal program up and running in the Austin area soon or that I get approved for a transplant. In any case, Nitey Nite will go on!


Thursday, July 8, 2010

I'm not cut out for Davita

So I have been gone a long long time. Not to worry. I am fine. I was quite busy with two classes and getting my house ready for the real estate market. My hard work paid off because I finished my classes and we sold our house-- and for a pretty penny.

So I have left California behind and will reside in Austin, Texas-- as soon as the house we're buying closes. Which might be a while... like 2 months or something. Bleh.

While we were living in a hotel so that our house could show, I switched from nocturnal dialysis to traditional, in-center, thrice weekly. I could feel a difference after one week-- some good, some bad. The good? I was actually able to get more sleep, because I was entirely sleep-deprived doing nocturnal. But in spite of the lack of sleep, I actually felt better on nocturnal. The foray into traditional dialysis was necessary for the time, but I sure missed feeling a lot better during my waking hours.

Now that I'm Austin, I'm back on nocturnal-- but with a different outfit. I loved Satellite Dialysis, but they don't have a nocturnal program in Austin. I have started up in a Davita clinic about 30 minutes from the hotel where we're temporarily living. The people here are nice, but .... it's so damned noisy all the goddamned night. The patients don't use headphones, which is totally mind-boggling. Right now it is 2:45am and there are tvs blaring, and to top that, the techs are talking, at a normal level.. and it's all driving me crazy.

Now admittedly, I don't sleep during dialysis because of the aforementioned chair issues, but even if I'm not sleeping I don't want to hear people yapping and their tvs blaring the whole time. Thankfully, my treatment here is only 6.5 hours. I think another 1.5 hours would drive me even crazier.

One good thing about this Davita center, though, is that they have wireless (no log in necessary)and they let me plug in my laptop. Yay on both accounts!

The bad, though? My second day here a patient bottomed out. They had remove her from her chair and begin CPR on her. They had to use the defibrillator, and call the EMTs to revive her. And that took a very long time. The lady looked pretty lifeless until the end-- and they took her off in an ambulance. I was totally freaked by this-- who wouldn't be? I don't know if she's recovered, as I don't think I've seen her back here at the unit. And today they said they had an earlier spot for me, so I wonder if I'm taking that woman's place *shudder* Seeing that whole thing unfold in front of me has strengthened my resolve to get a transplant-- and soon!

I'm at dialysis right now, and can't wait to get out. I can go back to the hotel and get 5 or 6 hours of sleep, and I'll be good to go. Well, good enough, for now, anyway.

Nitey night, from Austin....