Crossing the line from no to yes

Since Jim has been told that his immuno-suppressive drugs make him more vulnerable to skin cancer and that he should put on strong sun screen whenever he is exposed to the sun, he decided to buy a broad-brimmed hat. We’ve also seen a couple of friends recently who were sporting such headgear, and they looked good. So we went downtown today to pick up a Stetson. I personally think this is just the thing. He is now referring to himself as Indiana Jim.

Just two weeks since the kidney transplant, and I find myself thinking less about my present medical condition and more about the bigger picture. This has partly been sparked by a discussion now taking place in the Dutch parliament, having to do with the dire need in the country for kidney donors. The problem is that the number of deceased donors is low here because of the relatively low number of traffic accidents, which I understand to be the main source of such kidneys. Good news with a twist. So the government is kicking around the idea of offering financial incentives.

It’s against the law here to buy a kidney, so the idea is to offer the donor other financial carrots such as free medical insurance for life. Another idea is to promise the donor a high place on the kidney waiting list if the donor himself should end up needing an organ. But financial rewards are controversial and lacking in public support. There is a strong feeling that such offers amount to exploitation of the poor -- that in the end it would be poor people who would be lining up to give their kidneys away, and the wealthy would be spared.

Amazingly, this discussion has coincided with our operation. So here I am, fresh from the operating table and with a clear memory of how difficult it was for me to decide to donate a kidney. I cast my mind back, and wonder whether it would have been easier for me to say “yes” if I had been told that I’d have free health insurance for the rest of my life. According to a recent article in one of the country’s leading newspapers (NRC Handelsblad), the Dutch Council for Public Health and Health Care reasons that “if living donors were given some kind of financial compensation, they would be more likely to donate a kidney and fewer patients would die of kidney disease. The chance that someone might donate an organ because they were in financial straits would be lower if they were offered free health insurance.”

In our particular situation, financial factors were certainly important. We are self-employed, I am the main breadwinner and we have no disability insurance. Yet I don’t think free health insurance would have done much to push me over the line from no to yes. After all, if you have to make a certain amount of income each month, and you’re afraid that such an operation would leave you bedridden for months -- or at least greatly weakened -- a few hundred euros a months isn’t going to make much difference. When I look back now, I think it would be nice if the government were to reward me with something like free health insurance, but I don’t think it would have weighed very strongly in my original decision.

My problem, and perhaps the problem of many people, is that I was afraid of how the operation would affect my quality of life. I was afraid that it would create insurmountable difficulties, in the days that immediately followed my release from the hospital and in the months and perhaps years that followed. What I needed, as it turned out, were two things: I needed the reassurance of post-operative home care, and I needed good, clear, realistic examples of people who had donated kidneys and had been able to pick up their lives where they had left off. I needed home care and I needed heroes.

The home care was a problem. My aged mother lives with us now, and we needed someone who would live in the house while we were in the hospital to prepare her meals. We also needed someone who would be here when we got home to cook for us, shop for us and do light housework. We belong to a Home Care organization, as many Dutch people do, and I called them to see if this could be arranged. I was told to call another authority, a Central Indication Board, which I did. They told me that I could not arrange home care myself before the operation; that I would have to tell the people in the hospital when I checked in that I would need post-operative home care, and that the hospital would arrange it based on their evaluation of my need. Then I called the head of the transplant team, whom we had come to know well. I asked her if this was true. She said actually it wasn’t. In fact, you check in to the hospital and tell them you’ll need post-operative home care, and they put you on a waiting list. You may get your home care in six months.

So I contacted all our kids -- five, all adults, plus two wonderful partners -- and asked them if they would be willing to sign onto a care schedule for the days during and following the operation. They were only too willing to do so. We quickly filled up the calendar, and it worked like a charm. All the kids were actively involved in the care of Grandma and of us, it was great for our peace of mind and it was great for the family. It turned out to be the best solution.

But what if we didn’t have such a strong family network? What if our kids lived far away, or didn’t like us very much? What if we didn’t have kids at all? Would this problem have been a factor in my deciding not to donate a kidney?

My second need was for strong, positive examples of real kidney donors. I had been told countless times that you can easily live with one kidney, that it doesn’t shorten your life and that it doesn’t even affect your quality of life. But I needed real stories. I checked web sites. I read blogs. I listened to friends and relatives talking about people they knew who had donated kidneys. I even watched an internet film of the operation -- a hand-assisted laparoscopic donor nephrectomy -- from Fargo, North Dakota. All these things helped convince me that it wasn’t going to be so bad. I probably wasn’t going to die or have to live a diminished life. In fact, I’d probably be back to my old self within a period of about six weeks.

And that’s what happened. It’s two weeks ago today since the operation took place. Most of the time I don’t even think about the wound in my stomach any more. It’s a bit sensitive on the surface, but there’s no pain at all. The pain in my shoulders is gone. I still tire easily, but I can stroll downtown at my normal pace. I took off the months of October and November (I worked very hard during the summer so I wouldn’t have to even think about work and deadlines until December), so I can nap when I’m tired.

If I could give the government my own personal advice, it would be this: provide high-quality home care to potential donors and make sure they know about it, and start a high-profile campaign with strong, positive images of real kidney donors. Maybe a documentary. Maybe short public service spots. But let people know that donating a kidney is not as terrifying as they might think. Not by a long shot. I have a feeling these are the things that would push many people over the line from no to yes.

But I’m speaking for myself. Perhaps the first thing to do is simply to talk to living kidney donors and ask them what it was that pushed them over the line. Ask them what the government could do to make it easier for others to do the same thing. How many people are there out there who are agonizing about this very thing? How many brothers and sisters, friends, cousins of kidney patients are lying awake at night, wondering what to do? What would it take to help them decide to donate?