A good friend of mine was already on hemodialysis when I first got to know him. We are church friends. His life was quite restricted, not only by the need to visit the dialysis center 3-4 times weekly, but by the severe fatigue that is a side effect of the treatment. When your kidneys are not producing any urine, fluid accumulates. After a couple of days, you've gained a few extra pounds. Those pounds are extracted by the dialysis machine, along with urea and other toxins. But the best of the machines is a poor substitute for a real kidney. It will keep someone alive, but not very healthy. Just the rapid removal of fluid causes severe cramping and headaches.
Fortunately, my friend was able to receive a transplanted kidney a few years later. It made a huge difference in his life! He told me right after the transplant operation that the typical "cadaver kidney" lasts between 10 and 20 years, and then the body begins to reject it, in spite of the best anti-rejection medicines. He was a bit luckier than average; it lasted 19 years. Then he was back on dialysis.
This time, one of his daughters insisted that she be tested to see if she was a "good match", histologically speaking. And she was, a very good match indeed. She donated one of her kidneys, and he is back in comparative good health. Because the match is even better than before, and because of further advances in medical treatment, this kidney is more likely to last him the rest of a good life (he isn't as old as I, but old enough to make plans no more than a few years into the future).
My friend is Asian. I wonder what the outcome would have been if he were Black. After reading Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match, by Vanessa Grubbs, M.D., it seems likely he'd have died by now. The book is partly memoir, partly a medical travelogue, and partly an exposure of a medical system that has not yet become free of racism.
Vanessa and her husband, Robert Phillips, are Black. As a Black woman in medical school, and as a Black, female M.D., she had trouble enough getting the residencies and fellowships she needed for her chosen specialty. Now, part of that may have been that her choices didn't solidify until she had nearly finished medical school. The "solidifier" was Robert. He was already in advanced renal disease when she met him, and being kept alive with hemodialysis.
Love is really blind, it seems. Knowing what she knew (not enough, it seems), she still fell in love with him. She offered him one of her kidneys. After a lot of discussion, and testing that showed how good the match was, he accepted. She had already found out that Blacks on dialysis typically wait an extra 2-4 years, compared to a White or Asian, for a transplant to become available. It is not just a numbers issue. Blacks are seldom put on the transplant list as early as Whites or Asians, and until recently priority on the list was according to time on the list, not time since dialysis became necessary. That has since been changed, but it is not the only inequity in the system.
You'd think, once the transplant was performed, everything would be copacetic. The transplant doctor made a minor error or two, errors of, as Dr. Grubbs puts it, "laziness." Another surgeon, a more diligent one, had to re-install the new kidney so its outlet would not clog! There is much more about issues that a White doctor would probably never notice, but that she did notice.
Along the way, there is a lot of information about kidneys and kidney disease. Dialysis patients seldom talk about their troubles outside their family; I know my friend was pretty quiet about it. But the plain fact is, a dryer-sized machine is, even as we approach the year 2020, a poor substitute for a quarter-pound organ. And it all comes down to glomeruli.
A glomerulus is small. There are about four of them in each cubic millimeter (a pinhead) of inner kidney tissue; about 4,000 per cc. This comes to 2/3 of a million per kidney. And they aren't just passive filters. They contain enzymes and other active "machinery" that cooperate in blood filtration. It has been said that the kidney is second only to the brain in complexity.
Because of this complexity, it will probably be a good, long while before researchers figure out how to grow someone a new kidney from their own stem cells, making auto-transplanting a reality and eventually closing down most dialysis centers. It is one thing to grow someone a new ear or fingertip (we're nearly there right now); but even growing a liver would be easier.
I hope, long before auto-transplantation is developed, that the remaining racial disparities are dealt with. In addition to race, there is money. I'll let a quote from the book suffice:
"We get paid much more to keep someone on dialysis than to keep them off it…It's profitable to build another dialysis center, but we haven't figured out how to build comprehensive palliative care services."The fact is, not everyone in end-stage renal disease should have dialysis. Until the kidneys totally fail, certain palliative care and other measures can afford a person a better quality of life. And even at the very end, some people have the fortitude to decide, "I've had enough of this. Uremia isn't the worst way to die; better than most. It's time to go." Very few doctors, who got into the business to "help people", usually internalized as "help people not die", are willing to offer a terminal patient every option, rather than just the options of "fighting the disease."
I am not sure how effective an activist Dr. Grubbs is, but the presence of this amazing book is a great first step to exposing some issues that have been swept under the rug.
Posts
