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
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Michelle, what a great name -- that's what we named our daughter. Thanks John, Paul, George and Ringo.
ReplyDeleteWhy aren't you dialyzing at home? Just the thought of driving 1 1/2 hours each way is reason enough. When I first tried nocturnal several years ago in-center, I couldn't sleep either, and the benefits of nocturnal were quickly outweighed by sleep deprivation. My reasons were different, but sleep deprivation is sleep deprivation.
I started with NxStage over three years ago and have been doning nocturnal 6xWeek since last June. When I first started, I talked the hospital, my first home provider, into buying my a very cushy leather La-z-boy. As soon as I sit in it I'm already asleep. Although it doesn't recline in a completely horizontal position, it has proven to be good enough. Besides, if you're dialyzing at home. you have the option of using your bed. However I do have to admit that I take two benadryls per night. That'll help too.
I'm thinking you're crazy to dialyze in-center. But what do I know?
ReplyDeleteHey, Rich...sorry it has taken a while to respond to your comments. Well, I'm not dialyzing at home because it was an extreme burden on my family. I live in a single wide mobile home, and when I was doing home dialysis, the 35 boxes of NxStage crap compeletely filled the livingroom, and two bedrooms. Not to mention that I had complications the required 1)my son and husband to keep me from bleeding to death and 2) our inept EMT service to show up and not know what to do with me. le sigh. I also felt like I could not escape dialysis because it was always in my face at home. I find it much easier at this point in my life to drive to the dialysis center, even if it is 1.5 hours away. Eventually, though, they will have a nocturnal center closer to me...and even more eventually I'll be off the damned dialysis one way or another. hehehe...
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