The difference is night and day

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

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

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

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

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

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

All for now, and nitey nite...

Michelle/Treasure

Sites for Sore Eyes

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

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

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

(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

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