Sunday, November 14, 2010

Signs of life

I am happy to see the snow juncos back, though they signal winter's coming.  And I am happy to notice myself thinking hard this Sunday morning about political action.  I haven't had the energy for that in at least five years.

I began by thinking about the young people I have known through the transplant and dialysis e-lists who blow out a transplant.  College age kids who want to live like their peers, getting drunk and doing drugs, which is called "partying" these days, neglecting their studies and assignments and then staying up all night to do them.  I thought, How these kids need a new peer group, need to make radically different friends - and there are some sober, mature kids to be found.  I thought, Wun could start something like that.  As it is, we don't even have a general support group for us new abdominal transplants in this city of a million - it apparently withered away.

My thoughts went to the national Opt-Out Law, which does not yet exist. Currently, you get a chance to donate your organs when you apply for a new driver's license; you have to opt in, that is, say Yes.  Otherwise, the heart, pancreas, two kidneys, liver, corneas, and I don't even know what all will be buried or burned with you.

An Opt-Out Law would simply change the procedure so that if you don't want to donate after death, you have to say that.  I don't know whether this exists anywhere but in a kidney doctor's dreams, but it sounds simple.  (A quick search found that such a law was introduced in New York state, but I didn't find anything to say it passed.)  Thousands of people die every year waiting for a transplant.

I thought about how I would seek out a legislator and talk to them - someone has to introduce this as a bill, I think (more study is needed), and surely it should be federal.  I thought how I would point out the financial advantage to oh, everyone, but especially the US budget.  Medicare is covering 80% of the cost of my transplant, or about $144,000.  That cost will be made up in less than three years, since dialysis costs about $60,000 a year, and that's just the basic cost.  People on dialysis usually have all sorts of health problems, more cost.  There is a greater social cost in a seriously shortened life span; and well less than half of those on dialysis are able to work, because it is an inadequate treatment.  But it's the savings that should make a good argument for a legislator.
later - A status update
Everyone I know tells me my color is so good - that's how pale and wan I was.  But I am noticing now the difference in my thoughts.  Even if only for an hour this morning, I was imagining taking action, doing something.  Thinking. 

This, too, will probably pass, as I ride the moodswings brought on by the massive doses of steroids.  This one bottomed out last Thursday, which found me irritable and pessimistic, wondering who I am, anyway.  Today, calm and happy.  Tomorrow the mood may go higher, and I'll be scattered and talking too much, though I try not to have expectations.  I mention this because I glossed over it in my last post, Oh yes, moodswings.  They're not fun and games - but still infinitely better than the alternatives.


  1. Glad you're feeling better these days. Always good to see your posts. If an opt-out law was well publicized, and information easily accessible, I'd support it.

  2. Loved the blog, it is beautifully written. I'm a regular reader. kkeep up the good work

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  3. I wish I shared your optimism that any federal legislator would be interested in such a rational idea. I'm thinking of learning Dutch in case that helps when I apply for a transfer in my next life.