068- Be an organ donor!- part 2

Last week I shared Part 1 of why we should all consider being an organ donor. Here's Part 2 which goes into more detail.

Leading up to and since the donation I’ve received a lot of kind words from people, which is very much appreciated. But I also have to be honest that, at a certain level, the reactions some people have sometimes makes me feel uncomfortable. I do not consider this by any means a heroic or even an overly generous act. My wife, Libby, tells me to just shut up and say thank you, but it’s hard sometimes. In my mind, the decision to do this was a no-brainer. 

My difficulty in reconciling how I feel about it and the reaction from others comes from two areas. First, my personal situation held against Henry’s need for a kidney made the decision an easy one. Second, the general benefit to risk ratio virtually anyone has as an approved living donor - a huge benefit to someone in exchange for minimal pain and inconvenience.

Personally, I have been blessed beyond measure, some of which is the the result of simple luck. I’ve had a wonderful life, a rewarding career and am in excellent health, even without considering my age. I’m comfortable in retirement and the time needed for recovery is easy to find. Fortunately, my family, all of whom I consulted with before initiating the donor approval process, was fully supportive. The biggest downside in my life is not being able to play hockey with my buddies for a few months. 

Henry’s situation is not of his doing any more or less than mine, except he ran into some bad luck. Very easily our roles could have been reversed. When I asked him if I could identify him when I talk about this he wanted me to be clear that when he told me he was going on the transplant list, he didn’t ask me to donate, I offered. When my Transplant Center asked me what was motivating me to donate my answer was simple, I love my brother. 

In the broader context is the minimal risk any generally healthy person has with this procedure. While I don’t want to disregard the removal of an organ, the facts are that we need only one healthy kidney. Every recovery is different but a high percentage of the people who undergo a nephrectomy recover to their pre-op condition and can be back to work in 2-3 weeks and back to most activities in 2-3 months. If a donor were ever to subsequently need a transplant themselves their donor status automatically takes them to the top of the list. I believe there is an onus associated with organ donation, largely driven by the image of traditional deceased donations, which keeps people away from live donation. While this is certainly not minor outpatient surgery it’s also not as “major” as it’s assumed to be by the general public.

In my situation, I would have felt selfish had I not offered. When I can trade a minor inconvenience to allow my brother to have a healthier and probably longer life why wouldn’t I?  I was brought up by the example from my parents that the guiding principle we live under should be simple - Do the right thing and do things right. Bottom line to me is, this was the right thing to do. And doing the right thing shouldn’t be a big deal. 

That said, I also know every donor decision is different and I would never second guess someone’s decision not to. Personal health, professional responsibilities, the need to provide for one’s family and many other limiting factors can enter into it. I have to admit that had I been confronted with it 25 years ago my decision might have been different. But, in this day and age of “virtual” work, had I been doing what I was before retirement I know I would have been answering emails  by the weekend, on the phone and open to video meetings by the following Monday probably leading to a little time in the office starting the week after that. 

Outside of my personal factors and experience are those general to the procedure, of which I have found many myths and misconceptions, several of which Henry and I encountered.

When we first engaged in this journey, both of us assumed I’d need to travel to Sacramento (UC-Davis, Henry’s transplant center) to donate. We found out to my pleasant surprise that not only would pre- and post-op testing be possible at UW-Madison it would actually be possible to harvest my kidney here at home and then fly it to Sacramento for Henry to receive it. Granted, not everyone has a facility like that ten minutes from their home, but in many more cases being able to donate at a facility closer to the donor’s home significantly improves convenience.

Arguably the biggest myth associated with live donation is that you need to be a “match” for the recipient. In most cases this is absolutely not the case. Through the National Kidney Registry voucher program a person with a different blood-type can donate in the name of an intended recipient and that person then goes to the top of the waiting list and gets a good kidney from a third party who IS a biological match. Separating our timetables was a big advantage for me moving ahead rather than waiting for Henry’s formal approval and optimum scheduling for him.

Associated with that is the myth that a blood relative is a better match than an unrelated person. Henry and I had to get past this one when the voucher program was recommended to us as an option. Neither of us cared if it was my kidney going to Henry, only that he got a good one. We learned that once a match is established an unrelated kidney is just as good as a blood relative. 

Finally, as I have stated before, it’s a misconception that live donation holds a significant physical risk with a major recovery process. Two weeks out I feel great - almost to the point that if I had another spare I’d sign up to do it all over again! If you have virtually any risk at all you won’t be approved to donate. My transplant coordinator told me something that has stayed with me through the process - Live organ donation is the only surgery in all of medicine NOT for the benefit of the patient. The approval process is driven by the fitness of the donor, not the need of the recipient. 

If you have a health condition you think may prevent you from donation don’t rule yourself out. Engage in the process and let them make that determination. When I went into it I concluded that the downside would be the best physical I would even have in my life and if they discovered something I didn’t know, so much the better.

I’ll also mention that if financial issues are a concern, all medical procedures are covered with no impact on your personal insurance or future insurability. There are also programs in place to cover all travel and out of pocket expenses and to replace lost wages as necessary.

There are almost 100,000 people in the U.S. on the kidney transplant list right now with an average wait time of 4 years. Each year, about five percent of them die waiting for a kidney. This makes no sense to me. All I ask is if someone you know ever needs one, think about whether this something you could do. I have seldom encountered anything in my life where the rewards so greatly outweighed the risks. If you ever have questions, Sarah knows where to find me.

Thank you again to cousin Pete for sharing and educating us. I know I learned a lot more about the process. Please consider being an organ donor.