Nitey Nite- a nocturnal dialysis blog

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

2010-12-09T11:41:00.000-08:00

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).

Anyway...here's the link to the article-- http://www.renalbusiness.com/news/2010/12/mortality-higher-in-large-chain-dialysis-clinics.aspx

The Waiting Game

2010-12-02T19:20:00.000-08:00

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

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

2010-11-09T10:17:00.000-08:00

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!

2010-11-09T09:55:00.000-08:00

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.

The difference is night and day

2010-09-30T18:07:00.000-07:00

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

2010-08-31T13:41:00.000-07:00

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

2010-07-08T00:41:00.000-07:00

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

2010-01-13T11:22:00.001-08:00

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

2010-01-13T10:39:00.000-08:00

*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...

2009-12-06T12:31:00.000-08:00

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

2009-09-30T10:51:00.000-07:00

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

Recupe Roundup

2009-09-21T12:04:00.001-07:00

Well, my lovelies, it's been awhile because I have been in and out of the hospital, and recuperating away from home.

Boy am I bored! I'm not back to my usual snarky self because I'm still dizzy as all get-out. I suffered a sudden onset vertigo attack, and more than 10 days later, I'm still spinning a bit. I can walk about, but it's like riding a roller coaster through a fun house. I'd much rather be back at work, getting things done, instead of convalescing at my husband's house, which is 2 hours away from my home (I was visiting him for the holiday when the attack happened).

I'm not sure how long this condition will hang on. I'm not sure what role my dialysis plays in it, either. Having both conditions to worry about at once is a bit much. And I haven't even been home to get the results of my biopsy-- I could have cancer on top of all this other shit. UGH!

For now, though, I'm going to try to relax my little head and not worry about things, for the time being. I can always make a worrying appointment for a later time.

Ta! Michelle/Treasure

Where have I been?

2009-09-13T14:10:00.000-07:00

In the hospital, of course! See, a funny thing happened on my way to an orgasm-- I developed a crippling case of vertigo, resulting in extreme nausea and vomiting. Last Tuesday I had to go to the emergency room because things were just that bad. In the ER they hypothesized that I had had a mini-stroke or a TIA. I had a CT scan that night, that was clear.

Wednesday and Thursday were two typical days in the hospital-- with the exception of having a crazy cocaine-addle roommate who was talking to herself all night about people coming into her room, touching her and leaving stray hairs between her legs *yikes*

Friday they did a MRI, which came back negative for stroke, and I was released Friday evening. I ended up having conventional dialysis twice in the hospital. I can't help but wonder if I would feel a little better now if I had had two long dialysis sessions, instead of the 7 hours I got in the hospital.

I'm going to be recuperating at home in Berkeley for the next several days, and hope things will improve enough for me to drive myself back home to Monterey Bay. This isn 't quite what I had in mind for an extended vacation!

Subdued and dizzy...

Treasure/Michelle

I'm in the Funny Papers!

2009-08-25T12:22:00.000-07:00

Well, now the whole USA can bask in the glory that is Michelle Adams-Walton, because I have made USA Today! My own countrymen may take notice of me-- goodness knows the Dutch have been paying attention *waving at my fans in Dutchland* hehehe.

I have been concentrating on graduating from grad school and remodeling the house my husband inherited, and have tried to stay away from the raging healthcare debate. I can't believe some of the dumbass commercials that are being run by the anti-reform people. They must think Americans are retarded.

Whooops! Maybe collectively we are more retarded than I gave us credit for-- er... if you believe that Obama is advocating for death squads and all that garbage, you must not be too bright. Anyway, I'll need to take more blood pressure meds before I jump into that fray. Oh, and I probably should stay away from my favorite dialysis discussion board, because it's probably getting stupid there, and the conservatives who were going bonkers during the election are probably spreading their half-truths and no-truths again.

Argh!

Anyhoo...great article by Rita Rubin. Check it out.

And if you want an autographed pic, just let me know. I'm sure we can set up something through PayPal. hehehe.

Something new...

2009-08-22T21:01:00.000-07:00

More shameless plugs.

The woman who cannot drink to her heart's delight is now a wine consultant-- for Wine Shop at Home. Here's my redirect site: http://www.mywinegoddess.com . It'll be fun, though. And I can get away with sipping/tasting wine. Just because I have access doesn't mean that I have to guzzle the stuff.

Though, when it comes to milk...I just can't resist. I bought a quart of milk on the way home from dialysis this morning, and I was so nectarized that I was weeving and bobbing on the highway.

Oh milk! Oh milk! How I love you! One day I'm going to have a new kidney and drink drink drink all the milk I want!

Well, I have something else to promote-- my new blog, http://www.bitchfactor10.blogspot.com . Because I need just one more place to let it all hang, ya know? I've only had the site for a few days, but I've found quite a few things to bitch about. Well, there's never an a lack of that in my life. But I think most of the time it'll be justified-- especially if things go the way I think they are going to go.

Sorry for being cryptic, but if you start reading the new blog, you'll probably understand.

Or just think I'm batshit crazy.

Which I am.

But you know you like me like that. *smile*

Michelle/Treasure is going nitey nite.

Paging Dr. Nads

2009-08-20T10:25:00.000-07:00

Oh, I don't know why I chose that title, but perhaps it grabbed your eye.

I have done dialysis in quite a few places. In a regular old dialysis unit, in a creepy dark dialysis unit, in my bedroom and livingroom. If I had held on to my NxStage I would have done dialysis parachuting out of a plane, or some such.

One of my favorite places to do dialysis, though, is in a hospital. I hate being in the hospital, but their dialysis units kinda rock. And even if you do dialysis in your hospital room, it still kinda rocks.

For one thing, there's usually fewer patients, or just you, if you have dialysis in your hospital room. The timing is more flexible-- you may get it really early in the day, or late at night. They feed you while you're having your treatment-- and no, I don't usually puke from eating on dialysis (just when they pull off too much fluid).

A couple things are icing on the cake for me when I do have dialysis in the hospital-- a call button and getting to lie down in the hospital bed and take a nap during the treatment.

I'm sure you're bored stiff with my dialysis chair woes. But really, sleeping while you're doing nocturnal dialysis is important. If I don't get enough sleep, it's bitch factor 10 (shameless plug for my new blog, www.bitchfactor10.blogspot.com) I can actually sleep in a hospital bed, if I lay it completely flat and have pillows in the right places. I think it would be great to have hospital beds in the nocturnal units, so I'm going to make a big push for that.

A rep from a company that makes medical furniture mentioned hospital beds for nocturnal dialysis a few months ago, and I'm just now following up on that. It maybe too late to make changes at the unit where I am now, but Corporate may be considering new spot.

Anyhoo...here's an image of the bed the rep mentioned to me. Do you think something like this would work in a nocturnal unit?

That's a pretty spiffy looking hospital bed to me. Though, in that shot, it looks like a Transformer-- More than meets the eye! It looks light weight enough to be moved around. And I think they'd be great for bed races, whee! Hmmm, well, we'll see, it might be too late, as I said, because the current unit just acquired some pads like they use for nappy time at day care centers.

Some day I will get to design the perfect nocturnal dialysis unit-- or even just the perfect conventional dialysis unit. Until then, I will continue to bitch and moan here. hehehe.

Yodiododidodo-- because I couldn't think of a better title on my lunch break

2009-07-31T12:26:00.000-07:00

Well, I tell ya, that new blog of mine, http://imfamousgivemeakidney.blogspot.com is taking off. So far, 4 famous people have logged in and added their famousosity to the mix. The kidneys will be rolling in any day now...any day now...any day... hey people! get those kidneys on the way right now. You're not really using them, are you? Well, ok...maybe you are. But you've probably got a spare that you could...um, spare, right?

Ok, now, I really need to think up a way of preserving all those kidneys that are going to come in. That could be problematic. I only pick up my snail mail about every 10-14 days. Hmmm, and if you saw my backyard, you'd know how challenged I am in taking care of igloos and other coolers. I don't think it's a good idea for me to receive the donated kidneys for others. But hey, if you're donating one to me, we'll work out some special delivery options.

What's been going on in the nocturnal dialysis center? I'm not getting enough sleep, but what else is new? Did I tell you about the janitor that knocks your chair while you're sleeping? He's kinda the "Terminator w/a mop." And then there's all the beeping and buzzing that goes along with dialysis machines. Oh, and a couple of snorers...but I can't be too bitchy about that because I snore when I sleep on my back.

I can't help wondering though, if there would be fewer nocturnal patients needing oxygen during their treatments, if they were allowed to sleep in a different position-- other than on their backs. You see, I think some of the snoring could be cut by being able to change positions...and that less snoring would mean less oxygen needed. But that's just my crazy hypothesis.

In any case, I wear my noise canceling headphones to keep the noise level down so I can sleep. But I really think I'm going to have to get out of my chair and strangle that janitor if he wakes me up again with his mopping!

Got a call from the social worker the other day to check in with me-- since I missed my appointment with her due to technical difficulties (I'll blog about that later). She wanted to know how I felt about a recent personnel change. They didn't exactly give me advance notice that a new nurse would be coming in-- but hey, I've already bitched about that enough and have gotten to the point to where I don't give a flying fuck.

Well, that's true. I will always give a flying fuck...but well, I don't have the time or energy for much more than a flying fuckette.

Anyhoo, the new nurse seems alright. He only once tried to tuck me in-- argh! They don't know that if I wanted a tuck-in I'd want a good night kiss and a glass of milk, too. Better back off, Nursy, I can tuck myself in and I know all you really want is to get a load of my hotness in my jammies.

The nutritionist had a lapse this week-- and put a smiley face on my progress report. I don't know why these "professionals" haven't gotten a clue that most of us dialysis patients don't want to be treated like kindergarteners. I want "just the facts, ma'am." When I have to share my lab results with another professional, I'd rather them not see that I've done a "great job!!!11!!!!111!"

Bleh!

I have heard rumors about other dialysis centers considering the in-center nocturnal option. And a couple of those centers are closer than the one I visit now. I am very loyal to the doctor who runs the nocturnal study I'm currently in-- I would hate to move away from her. But-- it's a pain in the ass to drive 1.5 hours each way to get nocturnal dialysis 3 times a week. That's time I could be using for other things-- like surfing for pictures of Robert Pattinson or getting my toenails painted.

Well, I'm going to have to wrap this up since I'm writing on my lunch break. Get that, my sweet employer-- I'm blogging during my lunch break, no worries... I'm on my laptop. I'm being a good girl, for once.

Nitey nite to you...

Michelle/Treasure

I'm on a roll now-- a new blog

2009-07-15T09:35:00.000-07:00

I can't help it. I have too much to say and I love mischief. I have created a new blog-- I'm famous-- give me a kidney! This is in response to Natalie Cole appearing on Larry King and getting numerous offers from the public of their kidneys-- all to save her celebrity-hide.

Why should only famous people get offers of transplants? What about the rest of us? I have created this new blog as a service to the Chronic Kidney Disease community-- now we can post why we are famous and have the world offer their organs to us. Er um, well, I meant kidneys, livers, etc... but there just might be someone that offers up some rather interesting organs-- if you know what I mean. *wink wink*

So, please, visit my blog if you're kidney crank and let the kidneys roll in!

http://imfamousgivemeakidney.blogspot.com/

Note to Davita: Your days are numbered, bee-otch!

Nitey nite...

Michelle/Treasure

(What) Comfort in the Dialysis Center(?)

2009-07-15T08:56:00.001-07:00

This one is from a discussion on www.ihatedialysis.com about comfort in dialysis centers. Here's my response:

For the most part, I have been happy with the professionalism of the dialysis staff in the centers where I've been treated (with the exception of visiting centers--yikes! travel is pretty much out of the question). Right now, there is some consistency in the staffing for our in-center nocturnal, so that has been a big improvement. Also, there is wireless internet now, but I don't use it because they wanted me to sign an agreement that I felt impinged on my freedom of speech-- and, a laptop (even one of the minis) would be too much to carry with all the other stuff I have to take for overnight in the center.

What I would like to see improved is the chairs (I have blogged extensively on the these torture devices), more cable stations (we have about 10 right now, not quite enough that's interesting for spending 24 hours a week on dialysis-- at night, no less), reasonable temperature control (three blankets is a bit much) and privacy.

Privacy is one of the biggest issues for me because 1) I don't want anyone seeing me while I'm being treated other than staff or family, 2) I don't want to see anyone else being treated (especially if they have the tendency to "die" almost every treatment), and 3) I'm doing nocturnal-- if I wanted everyone to see me while I'm sleeping I would invite them to cuddle up in my chair with me.

I met a design team (architect and interior design professor) at a work event and asked the professor about having one of his classes work up an ideal nocturnal dialysis design. His response was weak-- and so was that of the doctor who is running the study I'm participating in. This was disappointing because there would not be any cost to the center to have a design worked up, and the professor could have a whole new project for his students to work on (it would be easy enough to incorporate our needs into the objectives for student work-- especially since designing a "chair" is one of the main tasks).

Change comes slowly to the dialysis community. The change I see coming on the soonest is that I'm going to find a way to not have to stay on dialysis, hehehe. That will probably come long before a comfy chair or adequate partitions!

Nitey nite...

Treasure/Michelle

I'll show you mine...

2009-07-14T20:23:00.000-07:00

Yesterday some personage (I didn't know) came into the nocturnal unit and said he was going to take my picture. *HELLO* give a girl some warning before barging in taking her picture. My response to him was to bend over, but he didn't seem interested in taking a pic of my butt. And it's a most marvelous butt, too, all nice and flat, since I sit/lie on it 8 hours/3 nights a week at dialysis! Hooo!

I think they were taking the pictures for the study to show how much more marvelous we look now that we're on nocturnal. The truth is, I don't look like death-warmed-over now, but I do look like I've aged 20 years. People used to guess my age in my mid-20s...now I look my age-- 46. Sure, the nocturnal will probably help me live longer, but sheesh, I would prefer not to do so looking like some old bag! I used to belong to the (slightly offensive) black-don't-crack crew, for shucks sake! (Google-it, if you don't have a clue).

Yes, a totally vain moment. And I'm entitled, because I'm worth it!...er no... well, maybe not.

Tickling Your Funny Bone

2009-06-02T10:55:00.000-07:00

Ok, I'll have more to blab about a little later, but right now, I wanted to give a shout out to Rerun, one of the regulars on I Hate Dialysis dot com. She has a string there called Dear Diary which is hilarious. Click the link above and get your funny bone tickled...

...and I'll get right back to you

Treasure/Michelle

Grouch and Grow

2009-05-29T14:24:00.000-07:00

Greetings, all. This will have to be a quick one since I'm on my break at work.

One of the most teeth-grinding experiences of dialysis is not getting poked with a ginormous needle-- it is having to meet with the social worker and/or nutritionist. These dialysis workers are almost always the nicest people. But oy! I can do without those appointments. I know they are just doing their jobs...but couldn't we handle such matters via email or video conference or something? I only feel the need to meet with them when I need something-- and most times I don't need anything. I always ask for my dialysis lab reports-- the real reports, not the smiley face ones... and other than setting up visiting dialysis, I haven't had much call for a social worker. I like being in charge of my care, and usually can find the answers I need on my own. And frankly, I have trimmed everything away from my diet that I intend to, and I can make the changes I wish after viewing my lab results. I dunno! I wish this was something I could do away with.

Something else I could do without...hmmm... those pesky monthly visits with the nephrologist. Now in my current setting, it isn't a problem. I love the nephrologist we have heading up the research study. And she visits us in the clinic-- at night, no less! She's a fantastic doctor-- one of the best I've ever had. I'm talking about the visits with past nephrologists. Where I would drive 45 minutes to basically be weighed and have my bp taken-- two things I can do at home and did all the time during my dialysis sessions. I would spend less than 5 minutes chitchatting with the doctor and that would be the end of the appointment. And the end of my $450. I dunno... I prefer to go to the doctor when there's a problem, or when I need some answers to some research I've done (and most times, that could be handled by email). My time is limited and valuable and any appointments I have to keep need to be necessary and solve problems-- before the parking meter gives out and my checkbook!

Oh and here's another thing I can do without... social workers bringing up patients that have been on dialysis forever-- like that's an achievement I want to emulate. Not! Almost everyone who's been on dialysis long term, that I have encountered, is crippled...or has multiple amputations or two dozen other really bad health elements. But they're still alive (cough, cough). And even if I were to beat the odds and be healthy, I wouldn't want a long-term life of dialysis. I'm coming up on 5 years now...and I'm inching towards my limit. Tilt! Game over. It's an effective treament that allows me to have a transplant long-term, or it's curtains. I have no interest in being on dialysis long term. I really should make that clear to any social workers that comes within 50 miles of me. UGH!

You grouch, you grow. And then you die. Which seems rather merciful, sometimes. Not today, necessarily. I would like to get my house fully cleaned before I go. And clean ain't happen anytime soon. hehehe. But the day you hear me say, "Merry Maids came by and my place is soooo clean..." well, you'll know it's time for the Michelle's Superstupendous Exit Party/Rave. Get your dancing shoes ready....

Michelle/Treasure says "Nitey Nite and Party On"

Keeping Busy

2009-05-24T07:51:00.000-07:00

Wow, a lot of time has passed since I last blogged. I've been superbusy at work and my computer was down for a couple of weeks while Dell decided whether or not they were going to own up to the problems the XPS M1330 has. le sigh.

What's been happening on the nocturnal dialysis front? Well, I have been reading at dialysis the past couple of weeks. I started and finished all 4 of the Twilight books. That got me on a vampire novel kick. I'm not saying that Twilight, New Moon, Eclipse and Breaking Dawn will join the great literature canon, but there's something to be said for selling a gazillion copies. Kudos Stephenie Meyer. Maybe I'll start a novelization of my dialysis experiences. Chapter One: Dr. Youknowwhoyouare, take a size 14 dialysis needle and stick it where it don't shine!

These Twilight stories of a teenage girl who falls in with a vampire classmate and his vampiric family are perfect dialysis reading. Why? Well, it's nice to read about someone else getting the blood sucked out of them, ya know? I wish I could have a vampire lover who would pierce my supple neck with his pointy fangs and suck all the bad stuff out. That would beat dialysis any day.

And I can deal with the undead stuff-- I'm already undead from my kidney disease anyway. I'm living on borrowed time, should be dead, but lo and behold I'm still sucking air. And, hey, in the vampire book I just finished, Robin McKinley's Sunshine, the vampire lovers have super long-lasting erections. I could get a side order of vampire loving with my fangoric dialysis treatment. Sweet! I think I've got something here worth exploring. Now I just need to find a willing vampire...

What else is going on? Well, I've written about personnel issues before. Ahem. I still don't think the personnel issues are ironed out. I know my dialysis center is searching for staff because I've seen their ads posted on the internet. We had a tech come in and "try out" nocturnal the other night. Of course, that would be the night my blood pressure (uncharacteristically) bottomed out and I started projectile vomiting, hehehe. I don't know if that tech is going return. We have this tech now-- let's call her Gertie Gumdrop-Britches, who is a fantastic tech and she has been with us since the beginning of the study. I do hope they keep her. She knows her stuff...and she knows me by now. I really need consistency in my dialysis staff. I'm not sure I can continue doing the nocturnal if they diddle with the staffing. Unless they are bringing in a team of vampire techs and nurses. In which case, Gertie, it's been nice knowing ya! hehehe

I don't know that I'm going to be able to enter the Miss Fistula Beauty Pageant. My fistula took a hit (metaphorically, well, mostly) last week when we tried to stick in the no-man's land again. It infiltrated-- yet again. That makes 3 years of trying to use my upper arm, and I think we have proven conclusively that it can't be done. Likewise with establishing buttonholes. My fistula is just resistant to the whole idea. And we have tried about 4 times now...over the past 3 years and they just won't take-- no matter how careful we have been to establish the buttonholes the right way. My fistula's uncooperativeness just means that I'm going to have to find an alternative to dialysis.

Oh CureforFSGS where are you?

Until next time...nitey nite!

Michelle/Treasure

The Revolving Door

2009-05-03T11:15:00.000-07:00

I will probably catch some shit for posting this, but the truth shall free us to have shit thrown at us.

I hate, hate, hate sudden personnel changes at dialysis. I know it can't be helped-- if one's son cuts off his sister's head-- maybe you have to quit. Or if one of the techs is humping the old ladies when no one is watching-- well, ok, let that person go. But lately at dialysis, it almost feels like a revolving door.

It takes me a long, long time to warm up to a new dialysis worker. There's the whole thing that noobs come in with their presumptions and you have to straighten them out.

"No, I do not use paper tape, even though every other patient does"

"Yes, it is quite normal for my blood pressure to be 240/120-- especially with your sudden appearance as the new fabulous dialysis nurse that we all cannot do without--even though you will only be here a month or so before they replace you with someone else..."

Ok, the first priority should be patient safety, and if you're getting rid of people because patient safety is at stake, then that's the way it should be. However, if one has "let someone go" because they raised issues or complained, well, if that's the standard, dialysis centers everywhere would be employee-less. le sigh.

Complaining by dialysis staff is constant. They complain about their hours, their pay, their bosses, their coworkers, the patients. But hey, they frequently have viable beefs. Though, when I look at their lives, in comparison to mine-- I do want to offer up a 64oz cup of SHUTTHEFUCKUP! Who's the one with a terminal illness that is taking 2-5 years to finish me off? Who's the one who's having to manage on reduced (or no) income and has 100k+ in hospital bills to pay off.

Anyway... I hate having to deal with new employees, and I hope they get their staffing shit together where I dialyze, and soon! This is distracting me from my chair saga. *rueful grin*

Michelle/Treasure

Are you sitting down?

2009-04-27T00:19:00.000-07:00

Ok, yeah, like the chair arrived. And it does lie flat...hooray! And it sits upright... yay! And, I should be getting more sleep, now that I have the chair. But oddly, I fall right to sleep in the chair, but I don't seem to stay asleep. It's the strangest thing. But this I can say-- my neck isn't killing me, because the chair allows me to sit and lie in a more comfortable position.

Now if you know me, you know I'm never very happy for long... le sigh. I am eternally grateful for Sate providing the chair. I just have a hard time enjoying it knowing that others are also having disruptive sleep because of the chair situation-- and that we only have the one chair, with my ass in it, to try out right now. I will have to discuss this with the powers, but I think there are one or two people who need the chair more than I do, because I had learned how to force myself into sleep in the interim while we were waiting for the chair to arrive on its magic carpet (how else to explain such a long delivery delay?).

Maybe we could play musical chairs when we arrive at dialysis and the winner gets to use the magical chair for the night.

What to name the chair.

Hot Seat Harry

That works.

Oh, and I have one (or two) other complaints about the chair (it would not be my blog without complaints, now would it?) The chair is narrower than most dialysis chairs. And this just won't do, because my next request will be lap dances before lights out. Better grease up the poles, staffers, cuz you're going to be the entertainment at nitey nite dialysis. You know who you are *wink wink*

The Pajama Game

2009-04-26T17:34:00.000-07:00

Ok, this one will be short and sweet because I'm posting during my break...which is short and sweet, especially if I have the real-butter shortbreads-- but I'm not this time, because I'm doing this instead.

The Pajama Game-- to wear or not wear the pajamas for nitey-nite dialysis. Well, at first I wore my pajamas. I went out and bought a special pair. You know, something that looks cute, but could be sexy. Yes, I need to be sexy for nocturnal dialysis. When else can I say that I slept with 6 or 7 guys in one night?

I wore pajamas the first few nights of nocturnal, and I really thought that everyone else would join in-- but no takers. And I felt foolish, so I started wearing shirts from my strange T-shirt collection and yoga pants. Now that's sexy!

But now we're 3+ months in, and we've added new patients...and there's a pajama wearer. Well, since he's wearing his jammies I'm going to have to start wearing mine again. Maybe a fancy peinoir this time around? Footed jammies? Long johns? Who knows, but I'll be sure to take pics and post them.

I'm wondering what other people wear for their nocturnals?

Shout hallelujah, come on, get happy!

2009-03-13T14:49:00.000-07:00

Ok, no, the long-hoped-for flat dialysis chair hasn't arrived at the center yet, but I was looking over the stats for a nocturnal dialysis chair made by Diasol. They claim their nocturnal chair lies flat, and has a pull out foot rest. There are also options like heat and massage (though my center says that they don't have the electrical setup for juice-loving chairs). Ooooh, and the chair comes in different colors. I'm going to request a purple one- oh drat, I just looked and they don't have purple. Ah, well, maybe I should request a color that doesn't show blood (but we won't go there, now will we?). Let me see if I can put a picture of the chair in here... hold one.... hold one....

there ya go.

I like that the chair has a swing out arm feature, too...because I hate to see patients being precariously lowered into chairs with those lifts. So, scary.

My center says that they have ordered some chairs as a tryout, and I believe they are getting the ones I'm speaking about. Maybe I won't have to buy a dialysis chair afterall-- which is great, because I'd much rather buy a chair for my bedroom. hehehe.

Anyway...the link to the company that makes the chair is http://www.diasol.com/dialysis_chair.html

Take a look and tell me what you think?

That's all for this subject. Next topic: The pajama game.

Nitey nite...

Michelle/Treasure

And now for something completely different...

2009-03-07T14:43:00.001-08:00

Ok...well, maybe not. More of the usual bitching, I'm afraid. I'm not getting enough sleep at dialysis...blah blah blah. The dialysis chair is killing my neck, blah blah blah. I keep falling asleep on my drive home, blah blah blah. Well, my last post about dialysis chairs garnered a response from my dialysis center. And that response was...? Well, I won't go into that right now, but let's just say that the last word was that "they" have ordered a couple of chairs to be tested out and that those chairs should be here soon(ish). My neck will be grateful when the chairs arrive...so will other assorted parts of me. I'm not going to complain any more (in this particular blog, hehehe) about the chair situation. There are many other things to complain about!

To my way of thinking, dialysis is someone's idea of a fun-creepy method of torturing people. Sure, the "someones" want you to think dialysis exists to prolong your life...but I dunno... sometimes it feels like a cruel, slow death-- like watching a Flavor of Love marathon. Here's what I mean...

...spending hours on end in an uncomfortable chair that causes neck pain, back pain, leg pain, ass pain. The treatments dry you up, dry you out, cramp your style and your legs, make you tired and sleepy. Is this not torture of some kind?

Ok, the fistula. The fistula they want us all to have-- this ginormous snaking thing that has utterly put me off of short sleeves forever. Mine pulsates like crazy (high flows, high blood pressure) and it sometimes works too well. Even crazier is that some stranger tries to stick these gigantic needles into this gyrating mess on my arm. This method of keeping me "alive" (and yes, I have to use quotes because if you saw what I look like today on the 1 hour of sleep I got at the dialysis clinic last night, you wouldn't be assured that I'm alive) is ...in-elegant. I'm not sure where else on my body I'd prefer to be connected to the dialysis machine-- hmmm... my back, maybe? So I wouldn't have to see it. Eeesh! How about my false navel-- the one they created for me during my hernia surgery. Oh yeah, I already tried an adominal catheter and that wasn't particularly sexy. Gee, I do miss my chest catheter(s). There wasn't any pain with it...I could stand up and do aerobics during dialysis with it. A fistula is a pain the arm (and the ass!). And ugh, yeah, ok, you could start buttonholes and perhaps it would be less painful-- but getting the damned buttonholes going on my fistula is nearly impossible. I don't know if it's flows... fast healing...anuerysms or what, but getting the buttonhole needles in is painful and usually doesn't work-- even after 2 months of trying. *le sigh*

Using a fistulas is painful enough (with all those sticks every session-- with or without lidocaine)... but then I have to protect my fistula while trying to sleep during nocturnal dialysis. I tell ya, the anuresis alarms we're currently using prolly aren't going to detect blood leaks on me because the damned things ends up everywhere but near my fistula. hehehe. Oh well. Since I'm usually awake during dialysis I can usually see when I've sprung a leak. An anuersis detector with dual probes would be much more useful than what we have now. Maybe I should patent that, hmmm.

Ok...enough about fistulas. I'm moving on to the television setups in dialysis centers. Whose bright idea was it to have televisions on the ceiling? Even if you're in bordello position (tm) in your dialysis chair, can you really watch television comfortably with the screen kissing the ceiling? And what's with the remotes? Is the goal to deafen all the patients? My remotes only work on "OFF" "DEAFENING" and "MOST DEAFENING." Argh! Sometimes it much better to watch the television with closed captions, en espanol!

Let's see, what else can I complain about? Ah, the darkness of the clinic for nocturnal dialysis... hmmm..well, not a problem for me-- since I don't sleep more than an hour or so at the clinic. But I imagine it is difficult for other patients, who need darkness to sleep. I did see one patient with a mask over his eyes, but I don't know if I would get much sleep like that. They do dim the lights in the unit, but I know that's not dim enough for everyone. Then there the noise problem, though the staff keep the guffawing down for the most part, at our unit.

Ah...I have a dozen other complaints. Hey, dialysis totally sucks ass. Nocturnal dialysis just sucks a little less (if you can get comfortable enough). Still seems like torture to me. But then I haven't tried waterboarding. Sh! Don't let the clinical staff hear that word, it may become a new treatment. hehehe.

That's enough for now...because I'm at work and the Net Nanny the City runs will probably go off in a bit and forbid to me to type another stroke. Next time I'll try to post about the flat-lying dialysis chairs that I discovered on the internet-- and who knows? maybe by then the new chairs will have arrived at the center and I can offer my thoughts. *smile*

Happy Zzzzssss.

Michelle/Treasure

Not much in the way of "nitey nite" lately...

2009-02-21T15:12:00.000-08:00

As seen on http://www.ihatedialysis.com/ (er um...ok...so I did some editing to this version--truth-in-blogging 'n all):

Greetings, all. Well, I have been doing nocturnal for about a month now, or so. I love the way I feel-- but then I've always done much better on longer treatments (I did 8-hour/thrice weekly treaments during the day last year). My joints aren't as creaky and my phosphorus is actually too low and I'll have to adjust for that. My sleep is better-- on the nights I'm not at dialysis. hehehe. Basically, I CANNOT sleep at the center. It's the chair-- not anything else. I have noise canceling earphones and the light doesn't bother me...but OY! THAT CHAIR!

Let me continue my rant about the chair. My body totally rejects dialysis chairs. I cannot do a 3-hour treatment in a dialysis chair without it throwing my neck off. I have to sit bolt upright-- in the posture one has in a really good office chair. To sleep, I need a flat surface, where I can turn on my sides. I cannot sit or sleep in a reclining position--EVER.

Are my CAPS getting the message across? Actually, I shouldn't be shouting here. I made the staff aware of this problem I have with dialysis chairs before we begun this nocturnal study. I have made a point of repeating my chair problem at least twice a night during my sessions. I have made the directors and docs and some of the corporate board members aware of my aversion to the chairs in this center. And it isn't that this has fallen on deaf ears-- they have looked into getting some samples of alternative chairs, and they seem to be committed to purchasing at least a couple of chairs. But really, I can no longer wait for their approval process to run its course. And here's why...

Not only do I drive 1.5 hours each way to the center where the nocturnal dialysis is taking place, I frequently have to work early the day after a session-- for 8 hours. I find that because I do not get more than a few minutes of sleep at the center (sometimes I'm so exhausted that I will doze off for a bit) I end up sleeping-- on my drive home from the center at 6 am! This is not very healthy, and I'm sure that I'll end up negating the good from nocturnal dialysis by driving off a cliff on the trip back. * goofy grin* Anyhoo... I have endured this sleep exhaustion as long as I can. No mas! In this economy, I can't afford to call in sick (again...and again) because I'm sleep deprived from spending the night in a torturous dialysis chair.

I am now shopping for my own dialysis chair...and I will soon find out what I have to do to get the center to accept the delivery (isn't nocturnal dialysis great? I can now work full-time and use one whole paycheck to purchase a dialysis chair!) I am perfectly willing to let any and all other patients, doing dialysis at the center, use the chair when I'm not scheduled for it. And whooo boy, I came across one chair on the internet that lies flat, has heat AND massage. I just ask that the center designate the chair "the Michelle Adams-Walton Memorial Comfortable Dialysis Chair," after my demise-- which may come sooner than I anticpated, because I plan to scrabble over the falls in Yosemite over Spring Break-- that's how good I feel! Hmmm, on second thought, I think I'll be buried in that chair....aw! being heated and massaged into the afterlife sounds kinda groovy.

Anyway...I thought I would just give this long-ass update. More to follow...and please join in with your comments, razberries and the like.

Nitey nite...Treasure/Michelle

Nitey Nite

2009-01-25T14:36:00.000-08:00

Hey there! Welcome to Nitey Nite, my nocturnal dialysis blog. Here you will find my musings and murmurings about a nocturnal dialysis study in which I'm participating. And, rest assured, we'll jump the rails and talk about other things that fascinate or annoy the hell out of me.

The first few blogs will be nice and polite, but once the ball gets rolling... I will have made myself at home, and in my home I say and do whatever I damn well please!

If you don't know what dialysis is-- Google it! I know I'm a librarian, but I only look up information for other people when I'm on the clock... hehehe.

Ok, that's all for now.

Michelle