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

Recupe Roundup

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?

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!

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...

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

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

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

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(?)

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...

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

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

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

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

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?

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

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!

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...

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...

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

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