Like my first blog post, this entry and the next several ones will mostly be a look back to catch up on my experience regarding donation. For this I’m using a diary begun April 27, 2011, the day my online research began. In hindsight, I should have started this blog much earlier, but procrastination and perfectionism took their toll. It seems that for some things, like my donating a kidney or just starting a blog about it, the hardest part is getting started.
“How to donate kidney.” I googled these words, but it seemed odd. I didn’t need to have a specific recipient in mind to donate, but if I was serious about such a thing, wouldn’t I already have contacts? Something more personal than a computer search? But I didn’t.
Maybe this was one reason for my hesitation to start the research. Also, I wanted to first re-read the article that had increased my interest in “altruistic” kidney donation years earlier. But my office was so cluttered that I had no idea where it was. In fact, all the clutter of my life may have kept me from moving on this.
Certainly one reason for my hesitation was a lack of urgency. The need was not going away. It’s not like saving somebody from drowning. I had the rest of my life to donate my extra kidney.
In the meantime I happened to read about kidney chains. One article was about a one-year-old in neighboring Lake Hopatcong who was a part of one. The possibility of my donation sparking several transplants in a chain convinced me all the more that this was something for my bucket list. Why wouldn’t I do it? But still no sense of urgency.
The impetus to act finally came when it hit me last April that in two months I’d be 59. In a year I’d be 60! What if there’s an age limit? I searched online. When an age was given as a general guidelines, I saw that it was 60. But I found no specific age restriction. People have given much older. It depends most on the health of the donor, and I’ve been blessed with good health all my life.
But something else caused me to hesitate. My expenses would be covered, but still kidney transplantation has to be expensive. It adds to our explosive cost of health care. Then I realized that years of kidney dialysis for those awaiting a transplant might be more expensive in the long run. A quick online search revealed that indeed it is. In fact, according to a recent article, Medicare, which pays most of the costs of kidney disease, saves on average $500,000 to $1 million for each dialysis patient given a kidney from a living donor.
So finally I got serious and searched “How to donate kidney.” A National Kidney Foundation page listed the steps and was a good start. Other online sources described the ideal health of donors (good weight and normal blood pressure), risks to the donor (one site said chance of death is 1 in 1,700), and benefits of living donation for the recipient (such kidneys tend to last nearly twice as long as those from deceased donors). The more I learned, the more I wanted to go ahead.
Livingdonorsonline.org had a list of stories and blogs submitted by a variety of donors. All the ones I looked at described the experience as extremely positive. I found Father Pat’s story to be of special interest, since he was, like me, a Christian guy in his fifties. Many like him welcomed emails, and I enjoyed communicating with him. He is now 65 and still in excellent health. That was encouraging. There was much in these many personal stories that I identified with. They affirmed my decision.
One kidney site said that to donate, I had to work through a hospital. But by then I knew that that left out the important role kidney registries now play (and that web page has since been changed to include them). Registries can arrange paired donations and chains, and they are well positioned to perform good medical matches.
The registry that really caught my eye was the National Kidney Registry. Its clear and helpful website, the story of its origin by founder Garet Hil, and most of all its exponential growth in facilitating larger numbers of transplants through kidney chains, truly impressed me.
An article about a Chicago kidney chain confirmed my decision to go through a registry. It explained that hospitals tend to use good Samaritan donors for their own patients, making it harder to set up timely matches. Furthermore, when they do succeed, it results in just one transplant. I wanted, if possible, to use my spare to start a chain. Why not?
So on May 9, 2011, I called the National Kidney Registry. Tom there said that after testing and acceptance, they would try to match my kidney medically against all in the pool and work to develop a chain. I got back online, where my research began. At 2:45 pm I filled out the NKR registration form and hit submit.