I'm Off to New York!

I have long said that I should make a YouTube video about my life as a dialysis patient because the videos I have seen online don't give a very accurate picture. Besides, the technique I've seen displayed in these videos of hooking up to the dialysis machine is atrocious. Very unsanitary. No surgical masks, no hand washing. I wanted to set the record straight, as well as establish an online presence in case I need to solicit a donor.

Well, my vision is manifesting in a way that I never dreamed possible.

About a month ago, I read a book written by Sally Satel, M.D., who received a living donor kidney transplant before starting dialysis. "When Altruism Isn't Enough: The Case for Compensating Kidney Donors" really made an impression on me. This all made so much sense. Everyone else--surgeons, nurses, hospitals, insurance companies, kidney patient--were being compensated, everyone except the donor. Why not give the donor a tax credit, Medicare coverage for a few years, a scholarship, or some other government-facilitated incentive! This would be a way of thanking the donor for his or her great gift, and this would help solve the dire organ shortage. I won't go into every single argument that Satel makes, but each one is sound. There is no good reason not to compensate donors. (As the law is now, a kidney patient who gives a donor any "valuable consideration"--how's that for vague!--can receive up to a five-year prison sentence. Can you believe it--five years for attempting to save your own life!)

I wrote to Satel c/o the American Enterprise Institute, at which she is a fellow. About two weeks ago, I received an email response. I said I was interested in working toward changing this law that is responsible for many thousands of deaths per year as kidney patients languish on The List, waiting for a deceased-donor kidney that never comes. She put me in touch with Robby Berman, a journalist, activist, and man who splits his time between Israel and the U.S., attempting to encourage Jews to donate their organs upon death and/or to become living donors.

I met with Robby for coffee a little over a week ago when he was in So Cal on business. I made it clear that I was very interested in helping him ease restrictions on compensating donors. Now remember, this is not some rich kidney patients giving cash to poor people for their kidneys. This is government-regulated compensation.

On Friday morning, Robby called to ask if I could come to New York for the filming of an HBO documentary on the sorry state of the U.S. organ supply. Later I heard from Jay, the HBO producer. HBO is flying me to NYC on Wednesday morning, putting me up in a hotel for two days of meetings and filming, then I'm staying on for five more days to see a few sights. Wow!

This is certainly manifestation at its best. My dreams had been rather modest--a home movie-quality YouTube video that would educate the non-dialysis public and would give me a presence in front of potential donors. This is quite a bit more than I requested. I am very grateful.

Kaiser Said "Yes"!

The Kaiser kidney transplant board met last Friday to decide my fate. Unfortunately, I was left wondering all weekend, as the transplant coordinator didn't get a fax with thumbs up or thumbs down until this morning. I was given the OK.

Now it's up to the UCLA transplant team to say yes. After that, I will receive an official letter in the mail telling me I'm on The List. Until then, I'm still not on the list, but I'm inching my way closer.