A different perspective on “spares”

Last week, had the opportunity to chat with Harvey Mysel, founder and president of the Living Kidney Donors Network (www.lkdn.org). Harvey is a kidney recipient and now devotes his life to helping other recipients. We really had a fascinating discussion and I want to share a few points that really resonated for me.
1. People (patients) in kidney failure often don’t know their options for living donor transplant.
2. Our health system, quite simply, is not geared toward living donation and this is multi-faceted:
a. Physicians, by accepting their creed as doctors of medicine – first must do no harm. And while Lisa’s physicians’ goal was to help her, by taking a kidney for a live being (that’s me) they are actually doing me harm. I was (am) healthy – by undergoing surgery – they were risking my life and health in order to help another. That’s against their very basic principles.
b. Dialysis centers profit from people in kidney failure staying on dialysis. Their goals are not to get people OFF dialysis, but to treat them with dialysis. Educating dialysis patients about a transplant could hurt their profits.
c. Hospitals, most specifically transplant centers, certainly have incentive to help their established and even new patients receive a transplant – but only when that transplant occurs in their center. Sharing willing donors between hospitals is sharing with a competitor and potentially losing income.
d. Health insurers – it’s actually more cost effective for insurers to promote transplant. The costs of long-term dialysis and lost quality of life, productivity, poor health outcomes outweigh the costs of transplant.
This all just seems wrong! I have not hidden that my primary interest in this blog is to advocate for living donation, to eventually turn my experience into something that can help other donors or those considering donation – but good grief – people with kidney failure have some pretty steep battles to fight. One of my current frustrations is recognizing that there are thousands of people in the U.S. and the world in kidney failure. They don’t know all their options and our health care system just isn’t adequate nor incentivized to help them. I always thought being in health care was about helping people. I think we need to get back to those basics…..
Overall donation status update: I’ve mentioned in past posts that I periodically have discomfort along my incision – I don’t recall feeling any at all this week! As I’ve been losing weight, I’m noticing my tummy in that area is rather lumpy. Will have to keep watching that – I don’t want lumpy abs unless they are 6-pack! My quest to prevent diabetes and hypertension via weight loss continues. I lost another 3 pounds in my 2nd week in Weight Watchers. That earned me my first 5 lb star (and an overall total to date of -6.6 lbs). I am really pleased with that level of weight loss this week. I’m an emotional eater. I had a really crappy evening on Monday, and I didn’t turn to food. I re-directed and called a friend! For me, that’s a great success! More to come next week. In the meantime, think about what you might be able to do to help educate people on their health care options – don’t assume our system will be their advocate.


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