Stayin’ alive

A kidney dialysis/transplant diary

Blistered sister

Damn.

And double damn.

I returned to physical therapy Monday.  Walked about 300 feet and did a one-step exercise. Joe also gave me a good hamstring stretch.  This is all good. uh huh. Decided to take my leg off once I got into dialysis so I wouldn’t stress my skin too much. About 21/2 hours into treatment, they did a foot check and asked to see my stump as well.  “You’ve got blisters here.”

Damn and double damn.

We called off PT for the next two sessions at least  and put in a call to Sherri, my prosthetist, to see if she could tell me what I’m doing wrong that’s causing the blisters. She just returned the call as I’m writing this post and told me to wait til she can take a look at the situation before I attempt to use the leg again. That’s a no brainer for me. The last thing I want to do is set up an infection. I’d rather be overly cautious than lose more of my leg, but at this rate it feels as if it will take a year to get in 2 weeks of PT treatment.

Jodi, the physician’s assistant in Dr. V’s office, prescribed something other than Immodium to try to control the loose stool problem I’ve been having. I certainly will be relieved if it works. I’m tired of doing a prewash rinse out of nightgowns and underwear. I know: too much information.

But, the sun is shining and the snow has melted and we’re not in flood-troubled Grand Forks, so smiles are in order.

March 31, 2009 Posted by | kidney | 3 Comments

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

A few reviews and a new endeavor

The three audience reviews I read online praised Who Lives?, the play that opened on World Kidney Day in the LA area, for its dramatic qaulity and black and white set. Bill Peckham of Dialysis From the Sharp End of the Needle doesn’t quibble with the dramatic content but says the entire story isn’t told and provides links to “the rest of the story,” as Paul Harvey would have said. Read his entry.

I would still like to see or at least read the play. Vested interest, don’t you know.

Meanwhile back at the homestead

As the waiting creeps on for vocational rehab and direction from The Gazette, I’ve decided to begin research on the 14th Iowa regiment, I company, during the Civil War. My great-great-grandpa served in the regiment, fought at Shiloh in “the Hornets nest” and was captured – along with over 200 other soldiers from the 14th – and discharged at Macon, Ga.

I’m thinking of writing a historical fiction based on his service, the homefront in Henry County, Iowa, and the family connection. There’s plenty interesting about Henry County at the time and about David C.’s family and neighbors. The story could start with the early pioneer days (David C. is first noted in the 1854 census but family names show up even before that date).

The county was also a settling place for Quakers as they met their way across the country. Those Quakers became part of my ancestry, too, and the push and pull they must have felt when it came to serving the union would have been strong considering their abolitionist tendencies and their pacifistic religion.

I’ve done some genealogical research on David C. beginning nearly a decade ago, put it aside too early and lost all the accumulated paperwork in last year’s flood so I’m duplicating now. I find it much easier to find information online than it was 10 years ago.

The realization David C. was a Civil War vet came from that earlier research, at least to my mom. I found the obit for David C., who had moved  many of his family to Oregon in the late 19th century, and read of his service. I soon asked Mom, “Why didn’t you tell me David C. fought in the Civil War?” Her answer was that she didn’t know he had.

Filling in the years after David C. left Henry County was nearly impossible at that time since a fire had destroyed the county courthouse in Oregon and most records of the time were destroyed. Perhaps I’ll  have better luck in this search.

Why historical fiction? Because I have no diaries or family papers to use as resource. Of course that means I have to set a plor, develop tension, develop character, set the scene, etc., not to mention find an agent, a publisher etc.  So don’t look to add the book to your Christmas list.

What do you think, should I blog about my search for David C. and the progress of the novel? In this blog or start a new blog?

March 15, 2009 Posted by | kidney | , , | 3 Comments

I’d like to be in LA LA land this week

World Kidney Dayis March 12 and among the observances is the opening in Los Angeles of a play, Who Lives?.
I wish I could be in that opening nght audience.
It is a play about the first dialysis treatments offered in the U.S. and how the difficult decisions of who would receive treatment were made. Made by committee, how difficult it must have been deciding who was to receive treatment and therefore a reprieve of the death sentence they faced.
Such decisions should not be put in the hands of men, you could say with certainty, but medical advances have led to questioning medical ethics in many areas besides kidney disease.
It would seem times have changed and dialysis may seem available to all those in need, especially with Medicare provisions to help those of us who need the lifeline of dialysis. But will it remain so?
It’s a nagging worry at the back of my mind. Treatment for me totals – literally – hundreds of thousands of dollars a year, even at the reduced costs to insurance companies and Medicare.
Is my life worth it? Does my contribution to society warrant such an investment? Am I self-denigrating to even ask?
Sometimes the questions themselves can be overwhelming and I can tell you I am not so altruistic as to forfeit my “right” to treatment.
How would I have felt had I been one of the early dialysis patients waiting on a committee decision as to whether I deserved treatment or not? I don’t know, but I suspicion it would have depended on the decision made.
How would I feel if such decisions become part of the future of dialysis patients? It certainly could happen with health care costs on the rise and the number of dialysis patients surely on the rise as the number of Type II Diabetes patients climbs.
It often seems that the one control, the one decision I can have over my life is whether to continue with dialysis or not. A life and death decision, to be sure, and at this point one I do not wish to relinquish to a committee or to anyone else.

March 8, 2009 Posted by | kidney | 4 Comments