Saturday, June 30, 2007

All Out of Spares

My left kidney has resided in my mother’s lower right abdomen since May 19, 2003. I gave her this gift about as happily as one can after agreeing to let a surgeon remove a vital organ for no other reason than to give it to someone else.

What I struggle with is that I had to do it at all.

This exchange occurred more than two years after my mother, then 68, went into sudden and unexpected kidney failure. I watched her endure months of life-sucking dialysis, depression, almost constant nausea and more hospitalizations than my father and I could keep track of. One night in the ER too much fluid in her lungs nearly killed her. I felt helpless beside her as an eerie gurgling, crackling sound emanated from her chest.

She was withering away. I cringed when she undressed. “Auschwitz,” I’d whisper in desperation, a plea for her to eat.

My mother — who just months earlier was a healthy, energetic artist who tended to her llamas and horses — was a shard of who she was, mentally, emotionally and physically. Dead in a way.

A transplant was really her only option to regain her life. But Michigan, where we live, has one of the longest organ wait lists in the country. Five years on average before a match, or a compatible kidney, becomes available from someone who died. A lot of people don’t make it five years. (By contrast, Ohio’s wait is about two years because — gruesome as it sounds — they have no helmet laws.)

Among the 200,000 Americans in the U.S. that the National Kidney Foundation says have chronic kidney failure and need dialysis to stay alive, in Michigan there were 2,261 people waiting for transplants in 2006 yet just 571 were performed in 2005, according to the Organ Procurement and Transplantation Network.

For my mother, the outlook was even grimmer. At her age, even if she did match someone, she’d likely be passed over for a younger candidate on the list.

It was a lot of pressure on me. I was her only potential living donor. But what if I didn’t match?

And who would help my father, ironically another victim of kidney disease, someday if not me? A few friends offered to do it but were too old or had health problems. A couple of family members expressed interest but they just didn't work out.

My intensely private mother even allowed my aunt to post a plea for a living donor to her church bulletin while I scoured the internet for altruist donors. Amazingly, I found a Seattle woman who would, ostensibly, be a backup.

But what I really wanted to know as my mother’s drama became my own, was where were all the kidneys from people who died, people who no longer needed them? Why aren’t they donating them to people like my mother? They don’t need them. It seemed so unfair.

I was told once by a doctor in the transplant field that if every viable candidate who died donated their kidneys, there would be no list. That was maddening to hear. I’ve also heard that in some countries organ donation is mandatory, or at least part of the system, unlike the U.S. where you have to opt-in. Those countries have no wait.

But how to get someone to agree to donate their organs after they die? No one wants to think about that. I certainly didn’t before this.

People don’t want to think about death, much less dying too young. And it’s a strange thing to contemplate. “Someone will be cutting out my organs and putting them into someone else?”

And scary. “Maybe the doctor won’t try to save me because he has a favorite patient who needs my kidney?” Scenarios like at rare and mostly myth.

You also hear of people selling their organs to ready buyers. I understand the desperation.

Some think it’s against their religion. It’s almost assuredly not, from Muslim to Buddhism.

For my part as a living donor, I didn’t take it lightly. What happens when you only have one kidney? Fortunately, nothing. I take no medicine or do anything special. Many people are born with one kidney and don’t even know it. We really don’t need two but it’s nice to have a spare. It’s amazing that we can even do this. I still wish it wasn’t necessary.

You see, in 2001, my father told me he had kidney disease, too, inherited from his mother. His brother died from it but my father always thought he’d been spared. He discovered his fate a few years earlier never telling me because, after all, I had a 50 percent chance of having it and there’s nothing you can do.

Of course, I lucked out or could not have donated a kidney to my mother.

But now as I watch my father do dialysis I feel helpless. I know his chance of getting a transplant.

And I’m all out of spares.