Stayin’ alive

A kidney dialysis/transplant diary

Caught up

I’ve been caught up in getting caught up on a number of things and then, of course, I’ve been caught up in the beginning research for my historical fiction.

Where to start?

Prosthesis update

I have the second prosthesis complete with a more dynamic foot and I will begin physical therapy sessions again on Monday. I must admit I’ve lost some ground and I need to find my motivation again. Part of it seems to be from my sleep pattern changing. It’s proving difficult for me to get my considerable butt outta bed in time to get the prosthetic on to go down for breakfast or catch the dialysis bus. I’ve got to get back in the habit of getting UP when the alarm goes off.

The prosthesis is a much better fit, much lighter and more easily accommodated in “normal” clothes. Pulling on the liner sock takes more time because it is a much tighter fit and needs to be carefully positioned so the pin is in the proper place to fit into the female receptacle in the leg itself. I seem to be unable to get it right the first time which adds to the frustration level when I’m rushed for time.

Frustration level

My frustration level seems to be lower recently, too. I find myself grumbling out loud when things – seemingly small, inconsequential things – go wrong. I bump into a waste can trying to turn my wheelchair in the bathroom and a grumble erupts; I catch the wheelchair on the corner of the bed and a grumble comes forth; I hit the side of the apartment door while trying to exit and  I’m belching minor profanities as I wrestle my way through; the cursor on this laptop jumps up or down the page – as it just did – and I’m gritting my teeth.

You get the picture.

It’s tough when you think you’ve been patient and resilient and you’re trying to keep your attitude good and these inconviniences literally bump into your life. I want  to say, “Don’t bother me. I’m up to my neck trying to deal with the big stuff in my life and I could quit sweating some of  the small stuff  if you’d just quit slapping my face with it.”

Some not so small stuff to sweat

I’m also disconcerted by some stuff I consider not so small. I’ve been urinating very little the last couple of weeks. Even with the boost of a diuretic, I seem to have very little urine. I’m worried about what that means in the progression of this disease and what it means on the more personal  level of how much fluid I can intake during a day.

I try to keep within the 48-ounce restriction each day, but it is extrememy difficult for me. I feel deprived of fluid all the time even though I may make the 48-ounce restriction only once each week. It’s one of those things that makes me wish for a transplant. Dr. V has asked for me to bring a urine sample Monday to test for possible UTI or other problems. I hope I can gather enough for a sample.

I’ve also been having a long-standing problem with l oose stools (aren’t you sorry you asked? Oh, that’s right, you didn’t ask but I’m going to tell at least a little of them). The attacks hit so suddenly that clean up can often be necessary. It makes one loathe to get more than a hundred feet from a bathroom, preferably in one’s own home.

I’ll leave it at telling you I am now wearing Depends overnight as a precautionary measure and believe me it is no small blow to my dignity to mention my “preventive” measures.

Also, I seem to be suffering neuropathy in my right hand and lower arm. It’s bothersome in many ways including not being sure of my grip because the feeling in my fingers is numbed. It may be some arthritis in my right collarbone pressing on a nerve or it may be diabetes. I don’t know but I don’t like it. And yes, I know the collarbone is a strange place for arthristis, but so it was diagnosed.

Meanwhile, back at the . ..

The research for the novel is going well. I’ve learned an amazing amount both about my family and about the Civil War. I came home from a grocery store shopping trip Thursday with an expandable file, a small stapler, a set of highlighters, a ream of copy paper, index cards and file folders.

“You’re really serious about this,” Mom said.

Yeah, I really am.


March 28, 2009 Posted by | kidney | Leave a comment