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...

Michelle/Treasure

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 center...so 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!

Michelle/Treasure

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....
Michelle/Treasure

Sites for Sore Eyes

Thought I would post a couple of links to sites that are worth a look:

Dance for Donors-- http://www.dancefordonors.org/

All Kidney News-- http://www.allkidney.com/

The Waste of Flesh

*sigh* I didn't really want to start off the New Year of blogging dissing social workers-- but ugh! I don't like contacting the social worker at my center unless I absolutely need to-- but whenever I do put aside my reservations, and turn to the social worker-- it is a disappointment. I have met very few dialysis social workers that are worth their weight in feathers-- let alone, gold. But then, my opinion about social workers is not formed just from the dialysis ranks-- but from having family members, coworkers and friends who have been social workers.

Social workers mean well-- I don't doubt that. But they can be a complainy bunch. I don't know many dialysis patients that really want to hear the dirty details of how difficult the social workers job and/or life is. You want to hear about a difficult life-- ask the patient about all that's going on in her/his life.

And frankly, it doesn't inspire much confidence when the patient/client seems to know more about resources than the social worker. I google the hell out of a subject before I approach a social worker for help-- afterall I'm a librarian, an information professional, and seeking out information is my job.

Ah well, I'm not going to complain any more about this. I have met some really nice, competent social workers-- in other states. Maybe this is just a California thing.

Moving on...

I have been giving more thought to having another kidney transplant-- especially since I may be moving to Texas and the wait for a kidney from a corpse is much shorter. My dear sweet hubby is considering donating to me too (though it's likely we'd have to do one of those swaps-- hubby prolly isn't compatible). Another interesting thing is that several people have suggested that I go overseas to arrange for a transplant. That's an intriguing thing but of course, US physicians will not commit to your follow-up care if you go outside of the US to have a transplant-- even if it is through perfectly-legal channels.

I hope the new decade produces new and effective treatments for kidney disease. I really don't want to remain on dialysis much longer. I am sick of having to arrange my life around dialysis sessions and I'm sick of enduring the pain that accompanies each treatment.

Happy New Year...hehehe.

Um, yeah.

And the beat goes on...

Still breathing. Still on nocturnal dialysis. Things are not bad...but there haven't been any new improvements, either. Still doing nocturnal three nights a week. Still driving 1.5 hours to get there. Tech Gertie Gumdrop-Britches is still there, as well as Tech Yummy Yummy Mansome. We have a traveling nurse-- but that's nothing new.

Then there's the clinical manager... Dr. Chrome. To be honest, he bugs! Everything he knows about me, he learned in a staff meeting-- but seems to not have been paying close enough attention-- or completely misunderstood what he heard. Why is it that nephrologists have a hard time looking at the cold hard data before them, before making recommendations. And looking at the "big picture." Nephrologists must be some of the laziest (or dumbest, I can't make up my mind) doctors out there, because all they seem to do is spout off what they learned from a nephrology textbook. They always seem to assume that your weight is static and that you always 3+ kilos to take off-- regardless of what the scale and your droopy (or too tight) pants, say. And while it's best not to miss a dialysis treatment-- they act like you're going to drop dead immediately if you change your treatment to a day later so that you can have a life, once in a while. I really think I may have to look into just who chooses nephrology as a career. Judging some of the duds I have met in the past, I wonder if they became doctors before MCAT screening, or from foreign diploma mill.

Now I do have a research nephrologist who is the schizznit personified. She is so on top of things. Maybe because she's a researcher, she has the ability to look at the data and plan an appropriate course of action. She is able to think outside of the box-- but perhaps that because she was trained in Europe. I adore her, and she has my complete trust. If only other neprologists were as dedicated and smart.

On to other things...

In the past month, at least three people have mentioned to me the possibility of going to Asia to procure a transplant. That almost sounds promising I really think I could raise the money to do something like that, but the stinky part is that a lot of U.S. nephrologists will not do your follow up care if you go outside of the States to get a kidney. I could respect that decision-- if I thought these docs were doing everything they possibly can to make more kidneys available stateside. And I think I've asked it before-- but it bears asking again-- does your nephrologist have two working kidneys? Have they thought of donating one now-- if not to one of their patients (all kinds of sticky ethics, there), how about to someone unknown to them. Hmmm, if every nephrologist with a viable kidney donated one, how quickly could we shave down the numbers on the transplant list?

After my last (and only) transplant fiasco, I thought that I wouldn't be readily considering having another transplant. But perhaps the way to look at it is that I may just need to have a new transplant every year-- much like getting your car's annual tune-up. And who knows, maybe one of the transplant might "take" and I might be able to go more than a year with one. Hmmm, I may have to see about moving to another state though, with a shorter transplant list. Hmmm, another transplant....

And if not that...

Dr. Italiano! Where's my stem cell treatment?

Lalala, life goes on

I haven't added a great deal to Nitey Nite lately. because it's pretty much been the "same old same old."  Well, with the exception that I've had a bout of sudden-onset vertigo-- of unknown origin.  And it looks like our dialysis days will be changing from MWF to Sunday, Tuesday, Thursday-- but when, I'm not sure.

Not a lot has changed with my dialysis care. My needles still hurt for most of my 8-hour treatment.  I don't sleep well in the center.  I still have cramps after I nap when I get home after dialysis. 

Well, one thing has changed-- my husband is driving me to dialysis now that I have the vertigo and haven't been cleared to drive yet.  It is nice to have hubby drive me-- but I do kinda miss my independence. I hope I'm never so decrepit that I can't drive myself to dialysis on a regular basis.  I hate waiting, and people who squire dialysis patients around are notoriously late. There's no way I could deal with that.

The vertigo is a nice diversion, in a way. It keeps me from obsessing about new treatments-- like the wearable kidney and stem-cell research.  I guess I'm ready to move on to the next big thing-- because what I'm doing now is just keeping me alive (which is a good thing-- considering the alternative)-- but I want to be healthy again!  There is so much I want to do-- and I just can't manage it-- tied to a dialysis machine-- even one like the NxStage, that travels.

Well, I have to go now and see use my Wii.  I'm hoping that the balancing exercise in Wii Fit help me get my equilibrium back from the vertigo. I'll keep you posted.

Nite nite...

Michelle/Treasure