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.
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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.

Waiting for a kidney

Still waiting to hear from pre-transplant.  We waited hard on Friday until 6:00, but the call did not come.  Then we relaxed as if kicked.  Tom speculated that if a cadaveric kidney comes in, everything to do at the moment with live donors is put aside while they try to do all the things they should do in the new situation.  Every minute counts when that kidney is packed in ice and the clock is running down.  I think getting the recipient ready must be like that scene in Close Encounters where they're running alongside the guy who's going to go with the aliens, asking him, "Have you been vaccinated?"  It would probably be like that.  Then you end up alone in a room on a gurney in a hospital gown with no underwear on and nothing to do.  Finally someone comes in and asks, "Are you still here?  They're going with the other guy.  Sorry."

In other words, we know there must be a lot going on to hold this up.  We begin to imagine the things that can occur along the way.  For instance, the MRI might show some shadow of a problem on the donor's lungs.  TB?  That will have to be settled.  Remember about uncertainty?

The best thing that's happened to me is that I wrote to Facebook about this and heard from a number of people who hadn't known what I was going through.  One of them was the friend of a friend.  She's been good to correspond with, and is inspiring me to ask more people to join me on Facebook and follow along with this process.

Suzanne has just put up a web site telling about what she needs, what this is like, and asking people to send it out to everyone they know.  Here it is. Please read what you can and help send it out into the universe.
[image:  Sheba demonstrating how to watch and wait prettily.]

Good Samaritans

The sun is out! It's been raining, and some of our peonies are face down on the ground. They don't mind. You dunk them in water anyway if you cut them, because they exist symbiotically with ants, and you don't want to bring ants into the house. Here are words from a peony lover:

Do not try to get rid of the ants on your peonies. This is a natural and temporary activity. It is believed that peonies produce small amounts of nectar and other ant attractants to encourage ants to help in opening the dense double flower buds found in many peonies. The ants may be found covering certain varieties and avoiding others, this is totally normal.

Think of it - selective ants. Who knows what else they know? If let loose in a museum, what paintings would they favor, and how many scientific explanations would be proposed?

I am rambling.

Took a walk outside and didn't find a peony I wanted to photograph. They are so photographed, it seems impossible not to be cliched. Instead, I shot green seedpods hanging from a redbud branch. Redbud is a characteristic woodland tree around here, and in much of the eastern US where there is enough moisture and it doesn't get too cold. You can see how prolifically it seeds.
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I was going to blog today beginning like this: What is Zen about an organ donation? Instead I found the peonies + ants leading me to articles about mutualistic relationships, which are many. Is organ donation one of those? No. Laura can feel the warmth of her own generosity, but I can't give her anything near the value of a kidney to me - ten or twenty more years, years of being able to write and watch my grandson grow up. She will have the very unusual benefit of knowing she did something difficult - it can't be entirely risk-free - and gave life. A feeling much greater, I imagine, than I used to feel when I gave blood, back when I was able. That was a soft, gentle pride.

But this is more, it's about doing for someone in need what you would do for your own sister or daughter. I am seeing Jesus' parable of the Good Samaritan differently these days. I think I remember that the Samaritan was a man from out of town who stopped to help someone he did not know - a stranger. We all give (if sometimes reluctantly) to our family, and our neighborhood. Religion applauds the person who can step outside that charmed circle and see the whole world as intimately their own.

How to be really important after you die

[poster by high school student Meghan Walsh]
Today is national Kidney Awareness Day. As it happened, I got my monthly blood draw at the OSU transplant center, so they can quickly check me for a match anytime a kidney comes in from a deceased type O donor. I've been on this waiting list for a year, answering the phone every time it rings; the average wait is three years.

Thousands of people die every year waiting for an organ, many of them kidney patients on dialysis, which extends life for a while at great cost and often with many difficulties. I'm walking a tightrope now, still getting along without dialysis. Stem cell research on organ regeneration isn't going fast enough to give me hope.

If you are not already a donor, you can go to this site right now -
http://www.donatelife.net/CommitToDonation/

Some twenty years ago, Tom had to talk me into becoming a donor. I'm an intuitive person, and I felt seriously spooked about being cut up and having my parts distributed after death - I wanted all of me to go up in smoke at the same time, as if it were a question of integrity.

Well, I've seen a lot of death since then, and I have a different understanding now. Like, dead is dead. You're gone, and your body is going to turn into something else, whether soil or flame and ash. But, amazingly, your organs can live on in someone else's body and save someone else's life. You won't mind. It's nice to think you might look on with a smile.