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End Stage Renal Disease (ESRD) is a devastating condition causing complete loss of kidney function. It can compromise such bodily tasks as generation of red blood cells, electrolyte balance, filtering of waste products, blood pressure maintenance and strong bone construction.
ESRD has many causes ranging from poor control of blood pressure to something as minor as overuse of pain-relieving medications.
It is estimated that more than 100,000 people in the U.S. have ESRD. The quality of their lives could be significantly improved by a kidney transplant, but only some 15,000 people are likely to receive one.
Why so few? There is no program for willing donors to be compensated for this sacrifice. And the voluntary rate for donors is falling every year.
The U.S. is divided into eight geographic regions, in which participating hospitals/transplant centers offer carefully screened kidneys from cadavers or living donors who volunteer their kidneys.
The patient is registered in selected geographic regions and placed on a national list for a kidney. There is a formula applied to select recipients but a long wait time is the norm, usually as long as seven years.
So how can a person in need of a transplant expedite the process? Here’s where the story becomes sad and frustrating.
Consider the case of Ken March, an Evanston resident: He holds a Ph.D. in psychology and is well known in the medical/healthcare marketing industry. He works closely with doctors and patients in various disease areas, helping to better understand how each individual patient type copes with disease on a daily basis – how decisions are reached, where mistakes are made, how they interact together.
Ken understands that the humanity of each individual must be recognized and that each individual is unique. Short- and long-term health care improve when medical professionals stop labeling those they treat as “arthritis patient” or “diabetes patient” and so on.
Ken has always been a fine athlete, having had a brief minor league stint with the St. Louis Cardinals before he became a skilled tennis player and avid runner.
But he was struck with ESRD three years ago and has grappled with the U.S. health-care system as he tries to find a compatible donor. He has lost 25 lbs. from a thin frame, is beset with constant nausea and dizziness and must undergo 9 hours of peritoneal dialysis every night.
He has unsuccessfully searched within his immediate family for an appropriate donor and has joined a subscription service that lists people who anonymously want to donate a kidney. Several heart-breaking near misses have occurred. One donor was found to have an enlarged kidney the day before transplant surgery; another was involved in a boating accident a week before the scheduled procedure. An additional pitfall is created by unscrupulous donors who either ask for an up-front payment (as much as $25,000) for the kidney or who demand transportation compensation and living expenses as they move through the system. Too many turn out to be less than honest about their intentions.
The constant challenge of living with ESRD is draining even for a professional like Ken. Having to cope with the very issues he has been studying actually renders his plight even more agonizing.
Ken is about to launch a Facebook page that can be attached to a kidney donor application and has had a notice placed in local church bulletins.
Yet after more than three years he is still without the needed kidney. Ken realizes that time is certainly not his ally. ESRD is not a static disease. He fears that without help soon, both his professional goals and his personal activities will permanently suffer.
When asked about the difficulties he faces daily and the frustrations he experiences, he maintains his perspective, noting that there are “lots of diseases out there worse than what I’m dealing with…” and that he will continue to fight.
But every once in a while he can’t help but wonder how it can be that here, in the United States, kidney patients have to search for help on their own.
Mr. Callahan, an Evanston resident, has written about his friend Ken March, who also lives in Evanston.