Saturday, August 20, 2011

one year later

a year ago

This morning we're heading down to the beach for two weeks. Two weeks of boogie boarding, custard cones, biking and boardwalks. Two weeks of freshly picked jersey corn, sunsets over the ocean, skee ball and go karts. Last night, as I was packing (I generally pack at the last minute) I was thinking that this time last year there wasn't even flicker of the possibility of a kidney transplant in my future. 

Well, there was a momentary flash. This time last year my brother was staring down dialysis. He'd hit renal failure and it was only a matter of time until he started. I offered up a kidney and, as always, he said thanks but no thanks and that he'd keep me posted as to what was going on. 

He didn't. Sometime that trip I remember being in the car and reading on Facebook that he'd started dialysis and it had gone well. I felt awful - I'd wanted to be there with him when he started. I asked him to please text me if anything came up so I wouldn't get big news in such a public forum. I got a text after the next session that it had been a disaster. 

And still, I was at the beach. 

As soon as we were back home I headed up, with Iz, to keep him company during a session. After two bus rides in rush hour traffic, and an odyssey through a barren office building we found him in a beige lounge chair in a beige room surrounded by pumps and tubes, beeps and flashes, fluorescent light casting a harsh glow over the many patients having their blood mechanically cleaned. 

I chatted. Told stories. Made everyone laugh. Offered to customize his favorite hoodie with a flap that would open for port access. And then I went home, shaken. 

I couldn't fathom being tethered to a chair for hours at a time, the process barely increasing quality of life. From that point I couldn't imagine the fatigue, the restrictions and finally how very much could go wrong. 

And never for a moment did I entertain the thought that one year later my kidney would be hard at work changing my brother's life. Saving my brother's life. 

This year I'll be hitting the beach with 4 fresh scars on my abdomen. And with a brother who has a healthy kidney and is dialysis free texting me from home. 

Wednesday, August 17, 2011

kidney stories

I got out of the shower this morning to find two voicemails from my mom, one at 10:08 and one at 10:10. Before I even listened I knew something was up. And then, while listening to the first message I could tell from the tone of her voice that something was wrong.

A cousin of mine died last night. He'd been in renal failure and was going to be put on the transplant waiting list next week.

I barely knew him. If he passed me on the street he wouldn't have know who I was. He was about 15 years older than me and perhaps I saw him once or maybe twice since I was a kid and we threw big summer bashes in my backyard when my grandmother and her sisters were alive. I had no idea he wasn't well. I'm not sure if he's married. I think he has 2 kids. I can't begin imagine how, overnight, their lives have turned into total, painful chaos.

Iz asked me, as I told her the story, if renal failure and kidney issues run in our family. No. They don't. But we just lived through months of kidneys 24/7, so to hear of someone we know at that level of disfunction so soon after transplant was unnerving.

Yup. That's the right word. Unnerving.

Before going through this journey with my brother, I didn't even know what exactly kidneys did. I had no idea where they were located. What renal failure was like. How dialysis worked. I didn't know about the potential heart attacks or high blood pressure, the fainting, and vastly restricted diets. I had no idea that waiting lists for kidneys were years long and that there was no way many of the people on those lists wouldn't live long enough to be a recipient. I was clueless as to how hard it is for many to find living matches.

I'd never thought about choosing to save someone's life. Or that that was even a choice one could conscientiously make.

We were lucky. I was a match. I was healthy enough to donate, which doesn't always happen. The kidney fit. And is working really well.

We were lucky.

My cousin never got that chance.

Which leads me to . . .

Last night I had dinner with a dear friend and, as usual, we talked about what I should do next. While she's in publishing, the last few times we've had dinner, she's brought up film as the direction she thought I should go in. As we talked about the transplant—it was the first time we'd seen each other in months—she was fascinated by the many, many aspects and angles of donation. And thought a film about just that would get people thinking and talking. As I've said before, this story isn't just mine. Nor is it just my brother's. There are thousands of people out there waiting. And suffering. Ill, with little hope for health. There are also thousands more who could change someone's life. Thousands who don't choose to be an organ donor. Others who might do some soul-searching and realize that when they look at the bigger picture, perhaps giving a piece of themselves is what they're meant to do.

I grappled with that myself. My own story came with such strings attached. Not knowing if the kidney would fit until surgery started meant I had extra what ifs to contend with. I wondered if, god forbid, the transplant couldn't take place, I'd donate my healthy kidney to a stranger. My family was appalled. I was on the fence. I didn't even want to think about it as I hoped beyond hope that all would work for my brother. But the inkling was there. If I was willing to go through this for him, could I do it for someone I didn't know? Would I? Should I?

Major questions. For the first time in my life I chose to be an organ donor on my driver's license. Why had I never done that before? For me, I think I was too uncomfortable thinking about what that meant. From here though, after giving up a kidney, how could I not give to others in need.

I've felt before that one of my jobs on this planet is to start conversations people are necessarily comfortable having. It's starting to feel like this might be the next one.