In December, 1998, I was diagnosed with Polycystic Kidney Disease (PKD). As its name implies, this is a disease where cysts grow on the kidneys, disrupting and eventually destroying their function. (For more on PKD, go to www.pkd.org.)

Although there had been previous indications that I had kidney problems, no one, including myself, had looked further into the situation. Then one day I had blood in my urine (presumably from a burst cyst), and we (my doctor and I) finally investigated. After numerous tests, including a 24-hour urine collection and a sonogram of my kidneys, the diagnosis came back as PKD.

PKD’s progression is fairly slow, and it was five more years (2003) before my kidneys failed to the point where I was put on dialysis. That point was under 25% kidney function. We have two kidneys, but we really only need half a kidney to survive.

Dialysis is a process where the patient’s blood is removed from his or her body, run through a machine which cleans the toxins the kidneys would normally remove, and is then returned to the patient. The machine functions as a (fairly large) artificial kidney. It should be pointed out that dialysis treats the symptoms of kidney disease; it in no way cures it.

Dialysis is usually done by sticking the arm with two of the biggest needles I have ever seen. The blood flows out through one of the needles, and back through the other. In order to do this, one of the arteries in the patient’s arm is hooked directly into one of the veins, to provide sufficient blood flow near the skin. Dialysis can also be run through a catheter, usually placed in the patient’s chest.

The side effects of dialysis are numerous, and mostly unpleasant. Kidney failure itself tends to wear one out; dialysis often intensifies this. I usually left dialysis feeling completely drained. Although I initially felt energized by my treatments, as the high level of toxins I had built up were removed, I soon felt tired most of the time, either directly from the dialysis, or from the lingering effects of the kidney disease. Other side effects include cramping, as the machine removes excess fluid which builds up in the body without the kidneys removing it (yes, in advanced kidney disease you stop peeing entirely). There are also nausea, headaches, and low blood pressure (again, from the removal of fluids).

I was on dialysis for seven years.

About six months after I went on dialysis, I was approved for a kidney transplant. Matching kidneys for a transplant is a fairly complex process. The first consideration is blood type. I am O+. Type O is the universal donor -- an O organ or blood can be donated to anyone, of whatever blood type. However, a type O can only receive an organ, or blood, from another type O. Therefore, although type O is not particularly rare, type O’s usually have the longest wait time for a transplant.

Perhaps strangely, no one else in my immediate family is a type O. So I was left looking for a kidney outside my family. (Perhaps even more strangely, even though PKD is a genetic disease, no one in my immediate family suffers from it. We had to go back to my great great grandparents before we found examples of kidney disease.)

The next factor is protein matches. Every person has six separate proteins on their organs. The more proteins that can be matched, the better the chance of a successful transplant. Six out of six is considered a perfect match, but usually only occurs in siblings. With modern anti-rejection drugs, it is possible to transplant organs in which there are no matching proteins, as long as the recipient does not already have anti-bodies to any of the proteins on the donated organ.

Since I had no immediately available donors, this meant I was placed on the list for a cadaveric kidney (one from a recently deceased person). Most people seem to have the idea that being on the transplant list is like waiting in a long line. Every time somebody gets a new kidney, everyone else moves up one space. People would constantly ask me where I was on the list. But it’s not like that at all. It’s much more like playing the lottery, and playing the same numbers every week. Your proteins are your numbers, and your blood type is the mega number. If your numbers come up, and you are the only perfect match, you get the kidney. If there are other perfect matches, or, more likely, no perfect matches but a number of partial matches, then other factors come into play, including how long you have been waiting, but also your health, your age, and even physical distance (for probably obvious reasons, if there is match in the same city as the kidney, and one across the country, the nearby patient usually gets the kidney).

I was personally reluctant to mount any direct appeals for a kidney. A number of my friends made informal offers, but rarely followed through. My usual response to such an offer was to tell them they needed to do two things first: a) find out their blood type (most people have no idea), and b) talk to their doctor about whether they were healthy enough to donate. I figured anyone who actually did both of these was serious about their offer; only a few even got as far as checking their blood type, and they all turned out incompatible.

Several of my friends were, however, more than willing to mount a search on my behalf. At least a couple of appeals were posted on various websites. I did get a handful of responses to these, but none of them, for various reasons, worked out.

The main thing I found out from this is that most of the doctors were reluctant to even consider donations from a stranger. There were two good reasons for this. One, it is not only illegal to sell organs, it is illegal to receive any sort of financial compensation for donating. Even if my family had paid someone’s travel expenses to L.A. to donate, that would be considered financial compensation. Secondly, a stranger is much more likely than a family member or close friend to back out of a transplant at the last minute. Both of these are understandable considerations.

Still, I was frustrated that the medical community seemed so unwilling to help out here. There were obviously people willing to donate a kidney to a stranger. Why didn’t the transplant organizations take advantage of that?  It seemed to me that there should be some way for the doctors to screen possible donors in advance, and then match them to the patients on the waiting list.

In the end, that is exactly what happened. But that’s getting a little ahead of the story.

Sometime around 2007 or 2008, various transplant hospitals hit upon a plan to increase the supply of available kidneys, a system known as a paired donation. In a paired donation, a patient with a potential but incompatible donor is matched with another such pair, so that patient A’s donor gives a kidney to patient B, and vice versa.

By this time my sister Jeananne, who initially had been reluctant to donate (and a bit relieved to find out she was incompatible), after seeing just what I was going through on dialysis, decided she was willing after all. So we started looking into paired donations. I had to switch hospitals, but after about a year we got accepted for a paired donation at UCLA.

In December, 2009, we were set up for a three way transplant, three separate donor/recipient pairs, the two of us in L.A., one in Salt Lake City, and one in Arizona. At the very last minute (the day before the transplants were scheduled), it fell through due to a disagreement between the hospitals over the financial arrangements.

In the spring another transplant was set up. This one, however, was not a circle but a chain. An anonymous altruistic donor in Chicago would give me a kidney. Jeananne would then give one to a man in Salt Lake City, whose wife would donate to someone in New Jersey, and so on. In the end, five people received new kidneys as a result of our chain. My operation was on April 10, 2010; Jeananne’s about a month later (unlike with the circle, the transplants did not all have to take place on the same day).

It seems like I should have something profound to say about the surgery itself, but as surgeries go, it was fairly uneventful (other than my doctor giving me the title of one of my favorite poems about the experience, and eventually the title of my book, when he said “Your kidney just arrived at LAX.” (In case your wondering, “LAX” is the designation of the Los Angeles International Airport.) I’ve had numerous surgeries in my life, and in a way they’re all the same -- you go to sleep, and when you wake up something is different, maybe noticeably, maybe not. From what I saw, Jeananne had a much rougher surgery than I did, at least in the immediate recovery; when I think about it, it makes sense that removing a kidney might be more painful than putting one in. Much more cutting involved.

The overall recovery was fairly basic. For the first couple of months I was monitored very closely (lots of 5 am blood draws and 7 am appointments). I had very little lingering pain, and no complications. I did have to avoid indoor crowds for a couple of months (which meant no work or poetry readings for me), but that wasn’t too big a deal. Since my parents came out to help me with the recovery, and Jeananne also had her surgery at UCLA, we had much of the family together for a month.

But it’s my life after surgery which is important. The transplant really has given me a new lease on life, even a new life. My energy level is way up. I can work full time again, I can attend all the poetry readings I want, I can spend my time on writing (there were times during dialysis when I was literally too tired to even write). More, I feel refreshed, I feel like things are possible again, I feel excited about life again. The change is dramatic.

Eventually I was put in touch with my donor. We were both eager to meet each other, but other respective doctors were occupied with arranging more transplants. Her name is Jodi Tamen, and she is a dental hygienist from Illinois. When the Chicago hospital put out a call for altruistic donors, she was one of the first to volunteer.

We met in person in November, 2010. She flew out to L.A. to attend a poetry reading I was giving. It was an extremely emotional evening. It was truly wonderful to meet her in person. She is as special a person as you might imagine. We spent the next afternoon together, and will surely spend much time together in the future. Picture above is of Jodi and myself.

If I may get on my soapbox for a minute, the shortage of all organs for transplant, not just kidneys, is acute. Thousands pass away waiting for the organs they need. And you have the power to change that.

Now I don’t expect you all to run out and donate a kidney to a stranger (but if you are so inclined, you can go to the United Network for Organ Sharing: www.transplantliving.org/livingdonation, or the National Kidney Registry: www.kidneyregistry.org). But you can still become a donor after you die. I know you don’t want to think about that, but all it takes is one or two simple actions, and then you never have to think about it again.

First, mark that little circle on your driver’s license. See, that wasn’t so hard, was it? (Okay, you may actually have to go to the DMV to do it, or wait until you renew your license, but please do it.) Second, just to be certain, make sure all your loved ones (parents, spouses, children, anyone who might be charged with making decisions on your passing) know about your wishes.

Again, I know most of you don’t want to think about what happens to your body after you die. But take it from one who has been there, the difference it can make in someone’s life is incalculable.