Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Monday, March 20, 2006

Acceptance

For those keeping score, today is Day +255... although I haven't been fastidiously keeping track of the individual days in the last few months or so. It's ironic that although it feels like forever since I had my transplant, I have difficulty believing that it's only been 8 1/2 months.

I guess it's safe to say that the effects of the chemo are largely gone at this point, although my bloodwork shows that it's still a wee bit out of equilibrium. 95% of all of my issues at this point are related to my damaged kidney. It's amazing how a damaged organ (or organs) can screw up your daily life.

Once I got the great news in January, I had visions of a slow, but steady recovery. I was struggling with the edema, but I figured that if I hung on through the winter, spring would come, and perhaps the edema would be lessened... or even gone altogether.

That was about two months ago. Today, I know that the healing isn't going to be as rapid as I first expected. At my present recovery rate, it may take nearly 2 (or more!) years for my kidneys to recover fully. This is no longer a "short struggle thought the winter", but the beginning of a phase in my life without a definite end.

The maintenance strategy for my edema has not changed much in the last 4-5 months. I am still spending a good deal of my free time propping my legs up, and I am taking more water pills to keep it down. My maintenance medication, Lasix, seems to become less effective as time progresses. I am finding that I need to take the Zaroxalyn (the big stuff) much more frequently in order to keep it down. Add to that the restrictions of my "no salt, no sugar, no alcohol" diet, and you can see how I can sometimes be an unhappy camper.

Of course, I'd rather deal with a little kidney damage than losing all of my organs and dying. I may be too stubborn to be happy, but not stupid to know that I wasn't lucky.

Eventually, I will learn to accept the handicaps that I have, and learn to live around around them. Like any other type of adversity I've faced, I will make lemonade out of the lemons that life has given me. (Just not with all that pulp -- I hate the way it gets stuck between your teeth.)

0 Comments:

Post a Comment

Subscribe to Post Comments [Atom]

<< Home