Follow-Up Living Donor Protections Living Donor Risks

Living Donor Denied For Lack of Follow-Up Care

The Mayo Clinic refuses to allow Randy Warner to donate a kidney to his friend Tom Roe because Warner is a ‘recluse’ with no family or friends to care for him after his hospital discharge.

Roe’s family offered to look after Warner, but unfortunately UNOS has very strict rules governing anything they deem ‘compensation’ to a donor for an organ. The recipient’s family caring for a non-related donor makes The Mayo Clinic squirm with possible impropriety.

Secondly, for 30 days post-surgery, Roe’s insurance covers the cost of any health services Warner may need, and The Mayo Clinic will be responsible for providing them. Regardless of public perception, some donors do experience complications, and if Warner has no caregiver, he may not seek assistance as soon as he should, if at all. I suspect the Mayo Clinic is protecting themselves from any liability if something detrimental should occur to Mr. Warner under these circumstances.

Thirdly, according to the article, The Mayo Clinic refuses to give Mr. Warner copies of his pre-transplant tests so he can and Mr. Roe can seek out another transplant center for the procedure. Obviously they can still solicit another center, but Mr. Warner will have to endure the diagnostic tests for a second time.

While I can’t speak about Arizona’s laws, Ohio’s stipulate that medical records are NOT the property of the patient, but of the provider (physician, clinic, hospital). A patient can obtain copies of these records, but for a price.

Personally, I think this law is ridiculous and yet another way for the medical community to take advantage of consumers. The consumer pays for the service, yet they are allowed no records of it? Do mechanics horde the documentation of work done on your car? Plus, this extra fee hampers lower income people who tend to visit different clinics or providers. They simply can’t afford this extra fee, which prevents their current physician from knowing their medical history, and consequently thwarts patients from receiving the continuity of care so important to good health.

And let’s not forget that Mr. Roe’s insurance company forked over approximately $10,000 for the pleasure of testing Mr. Warner, and it looks like they’ll be doing it again. While The Mayo Clinic is doing nothing illegal in refusing to give Mr. Warner his test results, I wonder if a sternly worded letter from Mr Roe’s insurance company might change their mind?

Living Kidney Donor Potpourri Psychosocial Risks

Locks of Love

I relinquished nearly a foot of hair today at the salon. It wasn’t a premeditated act, more like a spontaneous urge for change. I’ll submit photos soon…

Advocacy Living Donor Misinformation Living Donor Risks

This is How We Save the World, part 2

In my attempts to procure support for living donors, I found a site whose url promised just that – with an .org extension even. Upon rudimentary examination however, the site was bland, non-descript and painfully out of date.

I sent the following email, which has yet to acknowledged in any way:

To: info [at] livingorgandonor [dot] org
Date: August 21, 2008.

It is unfortunate that after months of research on living donors and kidney transplants, I only now run into your site. While I didn’t exhaust the information contained there, I was dismayed to find your statistical information ends at 1999. Have you stopped updating in lieu of other pursuits?

While your site seems to give a cursory overview of what it means to be a living donor, there is much information omitted. New surgical procedures, legal issues that differ by state, and most importantly, addressing the emotional and psychological well-being of the living donor. Your site, like every other site I’ve encountered, treats the living donor post-transplant as an afterthought.

95% of today’s transplants (grafts) survive the first year, but what of the other 5%? With over 6000 living donor transplants performed in 2007, that leaves approximately 300 living donors grieving and struggling to understand the tragedy befallen them and their intended recipient. Yet this phenomenon warrants nothing more than a single sentence on your site, with no suggestions on how to come to terms with the understandable anger, sadness and self-recrimination that follows such an event. Transplant clinics themselves lack the support system to deal with these unforgotten heroes, and the national organizations behave as if they don’t exist out of fear that acknowledging their pain might dissuade some people from donating.

If you have no further interest in the issue of living donors, please pass the torch on to someone who will keep the site relevant and updated. Otherwise, do all past and future living donors a great service and keep the site as thorough and current as possible.

Thank you,

Living Kidney Donor Psychosocial Risks

Coolness… and Then Not…

Over the past few days I’ve actually a couple of purchases at my zazzle store. This gives me a bit of warm fuzzies, not because I made a couple of bucks (and I do mean a couple) but because I wanted to give living donors some merch that would express their decision in a unique and non-preachy way.

I talked to my dad last night. He was in Pennsylvania for business and called me from the hotel. He’s a private kind of guy, as are most men his age, so I think being on the road away from his wife gives him a change to indulge in some nurturing and candor that he’d otherwise think he couldn’t. (Must. Be. Sturdy. Oak) I love him profoundly and accept that I am Daddy’s Little Girl even though some would say I’m way beyond that sort of thing. But let’s be honest, there’s no love and sense of security that begins to match which comes from a good father.

He cooborated what I suspected; Mary is bordering on depressed, if not tumbling into the abyss. Of course it’s a reasonable response to everything that’s happened, but it’s terrifying too. She’ll be starting peritoneal dialysis soon, which can be done at home every night while she sleeps, a stop gap until she heals physically, and is mentally prepared to go through the transplant process again.

Every day my heart aches for her. I’m completely helpless in the face of this thing. I did everything I could, short of giving up my whole life, in order to save her, and it wasn’t enough. There’s simply no easy way to recover from something like that.