Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
I wanted to re-post my “About Me” tab as a regular post. It’s kind of the quick background of my kidney history…
Just before April, in 1987, in the middle of my high school’s big Battle of the Classes, my girlfriend Erin broke up with me. I got really, really sick. My mother thought maybe my heart had broken. She was close.
Some 500 tests later (including being measured for an allergy to fava beans), I was still sick. I had experienced damaging, but acute post streptococcal glomerulonephritis (don’t bother pressing this link, I don’t even know what this says). Basically, I got strep throat, er, strep kidney. That was my junior year. In April of my Senior year, it happened again.
The diagnosis eventually became clear: my kidneys had been in a street fight with some invading punks, and they had lost. I was lucky enough to make it through 5 and a half years of college, and to be attending a school where a world-famous nephrologist (kidney doctor) worked. In a very Arlo Guthrie-esque way, the Doc told me, “Kid. You’re gonna need dialysis.”
And so in January of 1993 my medical team in Kansas City called me to the lobby of the University of Kansas Medical Center. “Kid,” they said, “you need to start dialysis.” And life as I knew it ended suddenly and apruptly. There’s really no mercy when body parts are dying.
Crap. This was supposed to be the quick story. Okay. Since 1993, I have spent almost a decade of my life running back and forth to thrice-weekly dialysis treatments, had two kidney transplants, had one complete kidney transplant rejection and am currently working on my next kidney rejection. (I also did some other cool stuff like have part of my parathyroid cut out – stuff like that).
I wanted to write this blog to inform you about my need for a kidney. At the core of this argument, I have to be completely selfish – it’s me who’s asking for the kidney. But I also hope to inform you about the thousands of people who wait, and die waiting, for a kidney transplant. I also plan to explain, in some gory detail, what a horrible thing it is to go to dialysis.
I have lived in secrecy and fear most of my life because of my disease. I never wanted anybody to think less of me. Now I must be public about it. My second transplant is still working, but barely. The average wait time on a transplant list in California is within the 10-year range (especially for us O-types). I have a family – a wife Rebecca, a step-daughter Wallace, and another daughter on the way Violet. I have a great job. I have almost everything any guy could ask for.
I need a kidney.
Jason, don’t most of us CKD5ers, but the sad truth is that just aren’t enough spare kidney parts to go around, and most dialyzors probably can’t qualify anyways. So whats the next best thing? Home dialysis. More and more people are finding the joys of home dialysis everyday. Not just PD, but hemo too. With machines like the NxStage and other small ones coming down the pike, people will have more choices to continue living.
It’s not a transplant that saves lives, it renal replacement therapy.
Well Rich, the lack of transplants (spare kidney parts) should not be an obstacle to getting a transplant. In my view, the lack of transplants should be one of the things that mobilizes end stage renal patients to action. Yes, dialysis treatment is improving and it is certainly one of the options an ESRD patient can choose from (many of us, as you say, don’t get to choose). I’d go further to argue that not all patients benefit from home dialysis – some prefer the setting of an organized treatment center. As for any particular brand of dialysis machine, I cannot say.
But for those patients who can and wish to receive a transplant, I would argue that transplantation does, in fact, save lives. The numbers are staggering; if less than .01% of our population gave a kidney tomorrow, the waiting list would drop to zero.
I suspect (and fear) that I’ll be on dialysis before I receive a kidney. But that will not prevent me from fighting for, searching for and advocating for a better transplant system in our world.
Thanks for your comment.