Stayin’ alive

A kidney dialysis/transplant diary

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.

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March 8, 2009 - Posted by | kidney

4 Comments »

  1. Kathy,
    You certainly are not the only one concerned about the future of dialysis. I’ve had a transplant and I’m back to late stage 3, early stage 4 CKD. I often ask myself if I will be offered the opportunity for another transplant when the time comes. Any subsequent transplants are higher risk. Will the state of our country’s economy require the government to dictate who does or does not receive future transplants and/or dialysis. Gosh like we don’t already have enough to worry about with our health situations. It is downright scary to contemplate that the government at some point may ration life-saving measures. Hope yourhe alth is holding steady. Spring is coming; that will brighten all of our outlooks. I really enjoy reading your posts. Thanks

    Comment by Guest | March 10, 2009 | Reply

  2. Thanks for commenting and sharing your feelings. It is a unique position, is it not? Makes so much feel like limbo and plunges me into deep thoughts of topics I might never approach were it not for this disease.

    Comment by iowakitkat | March 10, 2009 | Reply

  3. Regarding the fear that renal replacement therapy (RRI) won’t be around in the future may be a fear, but it would be less of a concern if more dialyzors treated at home. Studies have clearly shown that those who dialyze at home have more healthy and pureposeful lives. Their survuvability is greatly enhances. They have fewer complications, take fewer meds and spend less time in the hospital./ Enough so as to save the goverenment money if one considers the savings on Part A. The fact they are afforded more purposeful lifes would negate the feeling of worthlessness you ascsribed to.

    Phosphorus is much better controlled with more frequent dialysis with many not taking binders at all. Nocturnal, as I do, has brought my phosphorus down to the point that I am able to eat whatever I want, including cheeses and other high phosphorus foods. I can even drink milk and cola again.

    I also have to correct a couple of thr guests misstatements. S/he has had a transplant, but is still CKD5. That is, with the RRT of transplantation there still would be suffient renal failure to require RRT.

    Comment by Rich Berkowitz | April 29, 2009 | Reply

    • Rich —
      It’s not that I feel worthless. I know I have worth and that my life has a purpose but I do feel my illnesses are causing a drain — financially — on society and on me mentally, emotionally and physically.

      Comment by iowakitkat | April 30, 2009 | Reply


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