Archive for July, 2011

The Ventura Star did a very nice package on the absolute outrage that is Medicare funding for kidney patients.

Here’s how Medicare works. You can live on dialysis, which will tear down your health and for most people leave you too exhausted to do much of anything; Medicare will pay $71,000 a year for that, no problem. You can get a kidney transplant for about $100,000, and Medicare will pay for that, too.

For $17,000 a year, Medicare could pay for anti-rejection drugs. And it does, for the first three years after a transplant. And then for a lot of people, the organ fails because Medicare runs out and the people haven’t found other health insurance. That’s OK. Medicare will pay for another $100,000 transplant, if they can find an organ donor.

It makes sense in theory. With a new organ, you are healthy and should be able to get a job. But if you haven’t worked for the umpteen years you were on the waiting list because dialysis made you so sick, it’s a little hard to find a great job with full benefits. You can’t afford to take a low-level job with little or no benefits, because the Medicare will stop and your kidney will fail now.

I can believe that the government would limit anti-rejection meds to save money, but it’s costing taxpayers more.

My kidney daddy says he won’t let this happen to our kidney; he will think of something.

Meanwhile, there is a senator, mentioned in this part of the story package, who keeps proposing a bill that would provide lifetime coverage for anti-rejection drugs. Guess who opposes it: Big Dialysis. That’s just evil.

I’m not so political; I don’t write my congressional reps. But I’m going to write all of them and tell them my story and ask them to please ensure that my donated kidney will live on.

The Rev. Santhosh George of the Malankara Orthodox Church wants to donate a kidney to a 16-year-old girl named Jayasree.

Unfortunately, in India, only blood relatives of the recipient are permitted to be living kidney donors. Jayasree is in full kidney failure, and the priest, who runs an orphanage, wants to save her life. He has resorted to a hunger strike to persuade the government to permit an exception and let him donate.

Jayasree’s family members have exhausted their ¬†options, and the Rev. George has a demonstrated history of philanthropy. Can we agree that saving this child’s life will not contribute to organ trafficking and exploitation of the poor?

Are you a living kidney donor? Cara would really like your input on a survey she’s put together about the donation experience.

Won’t you fill it out?

Deceased donors, thank you for your donation, also, but … well, you know.

I just passed the second anniversary of donating a kidney to a former stranger, now a friend. And I will tell the story sometime about how that all came to be, but today I just wanted to write down a few things I learned.

My brain is iffy, but my body is strong. I always had this nagging fear that there was some hidden thing really wrong with my health. But I had so many tests leading up to this transplant, and I forced so many medical people, both doctors and friends, to review the tests that I know for a fact that I am very, very healthy. That is a gift and on some level, a relief.

Being different is a good thing. When it comes to schools of thought, I’m the fish swimming in the other direction a lot of the time. In the stories of other living donors, I have seen that our road less traveled is saving lives. (Is that enough cliches in one paragraph?) We are a little peculiar in that we see kidney donation as this very obvious thing. I have two; you need one or you will not live very long. Here, take one. Simple.

Set your mind on what you want. I don’t know how to describe to you how afraid I was of needles when I started the donation process. But I said to myself, “This is not about me, it is not for me. This is about something bigger, and I will get through this.” And I made it through all the blood draws and three or four IV ports without crying, fainting or whining. Much.

People want to get involved when good things happen. Friends and co-workers took care of my dogs and cats, got my car fixed while I was in the hospital, threw me a couple of parties and donated a good chunk of cash to my recipient’s medical bills. It made them happy to be part of it, and I really appreciated the help.

My aim is true. I have made some pretty radical decisions in my life. I’ve picked up and moved across the country any number of times (OK, four times). I live in¬†a house shaped like half a grapefruit. I’ve taken some big chances on love. I’ve changed careers several times. I’ve taken in some pets that no one else would have. And I donated a kidney to a stranger. Aside from the romances, it’s all worked out pretty well, particularly the kidney donation.

I have man kidneys. Surgical teams see you as a collection of parts, and they make observations about those parts without really thinking about it. So I learned by paying attention that I have freakishly little body fat for a woman my age, and I have the largest kidneys that two leading transplant surgeons had ever seen on a healthy woman. Well, I have one and Anthony has one. His doctor occasionally still exclaims, “Where did you get this thing?!”

There is nothing better than placing your body where your spirit already dwells. I believe that people are interconnected and obligated by their coexistence on this planet to help each other. I believe that any act, however small, to make the world a better place is valuable. Putting my faith in these ideas to the test by giving a kidney to a stranger was an amazing and profound experience.

So that’s me, two years in. I’d do it again tomorrow.

I haven’t blogged here in so long, and it’s not because I have lost interest in living organ donor issues; I just need to change up the format a little to keep myself interested in writing the blog.

I’m not sure exactly what this site needs to be, but probably more observation and less traditional weblogging. Living donation is becoming more common all the time, and there are lots of great sites out there that celebrate donations as they happen.

The other thing that kept this strictly a weblog at first was that I was under contractual obligation not to tell my story because my recipient and I were in the pilot for a documentary TV series that kept almost happening but then finally didn’t. Now I’m free of that restriction against writing about my donation.

So with that, I think I shall.