I got the call on my day off while I was in the middle of a nap. "You're disqualified as a direct donor because you're not a type match," the nurse said and I took a few minutes to piece those words together to figure out what they meant. The process of getting tested to be a living kidney donor is a complicated one and one which has many moving parts. Before I even got to the point where I could give a blood sample to see if I was a match for my friend I had to undergo an extensive health questionnaire by phone, where they asked questions about my weight, previous illnesses, activity level, smoking and drinking history and tried to get at the heart of why I wanted to give up one of my internal organs to another person. I hit my first snag in that initial questionnaire, having had some elevated PSA blood tests over the previous three years which required three prostate biopsies. Thankfully, each of these biopsies had been negative for cancer but the transplant nurse wasn't satisfied. I had to have my urologist call them and give me the "all clear" to pass on to the next stage of the process. High risk for cancer is a no-go in the world of living donors since most cancer treatments are hard on the kidneys. Thankfully, two weeks later I was cleared to go on to that next stage....the trip to my local hospital for blood and tissue typing.
I had been told that the results of those tests would take up to three weeks. I knew right away that this call, just two days after I had the blood sent to the lab, was not great news. I won't bore you with all of the tests that have to be completed to match donors to recipients in this process but my results were pretty straight-forward and easy to understand. My friend and I had incompatible blood types. There was no possibility of a direct donation to him. I had known that this was a possibility and I knew that this wasn't necessarily the end of the road for my kidney donation.
There are several "gate keepers" in this process. The transplant nurse, who was my first contact, was compassionate but direct. She had questioned my PSA tests and now her job was to plant seeds of doubt in my mind, make me think long and hard about my decision to go on to the next, more complicated step. She presented my options to me and suggested I take some time to think about it. She gave me any number of reasons why I may not want to have a major surgery. My promise to my friend, however, was that I would get tested. I had not hit a solid wall of "no" yet so I was determined to make good on that promise. Despite any number of reasons why I shouldn't be doing this, it still felt to me like the right thing to be doing. I had no doubts yet, no second thoughts. Despite this, the nurse and I agreed after this last phone call that I take a few weeks off and think some more about it. I had a regularly scheduled appointment with my family physician in a few days. If I was still agreeable and my doctor gave me a thumbs up we would proceed to the next step.
In any organ donation there are any number of variables that make donors and recipients good matches for each other. Donating to family, obviously, there is a much greater chance of compatibility. Donating to a friend is a little more complicated. Since I wasn't a match for my friend, my best option for helping him was something called a "paired match." In a paired match my friend and I are matched with another donor/recipient pair who also are not compatible with each other but for which compatibility can be established through cross matching one pair to the other. In other words, I donate my kidney to a stranger and the person who was willing to donate to that stranger donates his/her kidney to my friend. It can get more complicated than that, sometimes a chain of four or more donor/recipient pairs are involved to get the best matches for each recipient, but a more simple paired match works most efficiently.
So my decision was whether or not I wanted to take part in this paired donation process. Unlike direct donation where there is a simple scheduling of two patients, the process of pairing donor and recipient in a paired match can be unpredictable. Sometimes paired matches are found in a week, sometimes not for a year. This is a complication more of scheduling, however, and really made no difference whether or not I was willing to go through the process. Actually, the thought that my donation would help someone else, in addition to my friend, made it even more appealing to me.
I called the donor nurse back a few weeks later, after my family doctor gave me his blessing and after I had given it some more very serious thought. I told her I was willing to proceed with the paired match donation. Through her caution I sensed from her a feeling of calm satisfaction. She had done her part to make sure that nobody's time was wasted, that some clueless do-gooder wasn't clogging up the transplant process with empty promises and bad intentions. The next step, I already knew but was reminded, was a two day, complete physical work-up by a series of doctors, social workers, financial counselors and a number of tests to determine if I was a good surgical candidate. That series of tests would be scheduled at least four weeks out and I began to understand that this process was as much about endurance as it was about altruism or health. I was, however, up for the challenge. The more I learned about the process the more grateful I was to have been given the opportunity to experience it. Every step of this new journey felt strange but safe and I was willing to see where I would end up. I also knew that it was my opportunity as a writer, no matter how far I made it through this process, to tell others about it, make them understand how it works and give a clear description of the every step. So this is where I stood, looking forward a few weeks, willing to see where I was going and willing to share my journey with anyone who was interested. I had never been so certain of something so monumental. It was that certainty which guided me through every step in the process and I knew if I ever felt anything less than that, then my journey would be over. All of the lessons of my life had taught me that all of life should be lived this way, so I carried on, eyes wide open.
Wednesday, December 30, 2015
Saturday, December 26, 2015
An Easy Choice
There is a split second while you're falling (slightly longer if its a big fall) when you wonder how things are going to end. Fortunately, the time between becoming airborne and hitting the ground is often not long enough to fret about such things. So it was the day I went to the hospital to have my blood tested to see if I was a suitable kidney donor for my friend. Because I live over an hour away from the hospital where the surgery will take place, I was mailed a box of test tubes and orders to take to my local hospital to have the blood drawn and then mailed next day air back to the lab. Strangely enough, it was the box of test tubes I was most concerned with at that peaceful moment between the slip and the hit. It was just a wet patch of floor but I had encountered it with such force that the fall was intense, knocking the wind out of me and the box of test tubes out of my hands and across the hospital walkway.
It would have been an interesting development had my first step at being an altruistic kidney donor turned out instead to be the day I got my first broken bone but as things happen it was simply a bump in the road. I got myself up, glared sternly but compassionately at the man mopping the floor and helped a couple of other people across the wet patch. Then things went back to normal....or normal for me anyway.
The path that lead to that slip and fall, let's face it, had been a bit rocky anyway. It had been four years since my partner's heart attack, four years since I had quit smoking, four years since I had encountered my own labyrinth of health issues. It had also been two years since I had started losing a half a dozen people very close to me, often far too young and far too quickly. You don't mean to but you begin to wonder why at the end of the day some people live through the most incredible turmoil and crisis and some succumb to an aggressive disease like an icicle in the sun. Wonder all you want, though. It doesn't make a bit of difference. That was the knowledge I took with me into this next experience and it carries me through every moment of it. I often say that "knowing is better than not knowing" but when it isn't possible to "know", there is no sense in imagining what could go wrong (or right). Just living through the process is the best we can manage and things always turn out as they were meant to in the end anyway.
If you have ever known someone who has gone through the process of dying, you know that there is a look in their eyes, even in the most dire situations, where they would give anything to survive whatever it is that is taking them from this physical realm. There is a look of sadness and resignation, nostalgia and regret that is not spoken but understood. There are only rarely any moments of epiphany, those movie moments of sad good-byes or heartfelt apologies. What you get instead is a person who is silently willing themselves to live. And there is nothing wrong with that. Hope is a tangible thing when you are facing life and death struggles. You eat it, you breathe it. When it leaves you (and you know the moment it does) it knocks the wind out of you in a way you have never experienced before and you forget who you are and you forget that life is filled with grace. You find it again, eventually, but the loss of hope is something you never forget. What you do with that experience is part of the true test of living, of going on, and we all must do it in our own time, in our own way.
For me, I learned what that experience meant to me when a friend of mine posted on her Facebook page that her husband was in need of a kidney donor. He was about to start dialysis, a regimen he would continue daily for the rest of his life, until a suitable donor could be found. Nobody in her family was able to donate and they were asking for help. Having been through the experience of losing friend after friend after friend to illnesses for which there was no cure, I was struck by the fact that, in this case, there was most certainly something that could be done....not just to make him feel better.....but to save his life. The gift that I would have given any of my other friends I had lost the last two years I could give to him. I could keep that look from his eyes, I could keep him from losing hope and all that is wrapped up in that. I felt no hesitation. I did some reading, some research and called my friend and told her I would get tested for her husband. The testing process, I now knew, could take months and I could back out at any time I felt I needed to, so I promised to start, not knowing where it might lead.
As I sat in the waiting room at the lab, I felt like I was exactly where I was supposed to be. A bit battered and bruised from the fall, I understood that it was just a part of the process and I was sitting exactly in the right spot, comfortable now, resting, awaiting what might happen next. The year before had been an incredible journey of discovery and living out my lifelong dreams. Now I was going to take an unexpected road, cast aside my deepest fears and venture into a new part of life that included, hopefully, compassion and love and healing and.....life. It was time for some happiness, time to see what might happen to those eyes of hopelessness when hope entered them again. I had a feeling it would be worth the bruises and the scars, but I had no idea that the greatest part of the journey was inside my own mind and heart. That was, after all, where the scars of the last two years were deepest. Maybe I could save two lives in the process. I was willing to try anyway. To me it seemed like an easy choice.
It would have been an interesting development had my first step at being an altruistic kidney donor turned out instead to be the day I got my first broken bone but as things happen it was simply a bump in the road. I got myself up, glared sternly but compassionately at the man mopping the floor and helped a couple of other people across the wet patch. Then things went back to normal....or normal for me anyway.
The path that lead to that slip and fall, let's face it, had been a bit rocky anyway. It had been four years since my partner's heart attack, four years since I had quit smoking, four years since I had encountered my own labyrinth of health issues. It had also been two years since I had started losing a half a dozen people very close to me, often far too young and far too quickly. You don't mean to but you begin to wonder why at the end of the day some people live through the most incredible turmoil and crisis and some succumb to an aggressive disease like an icicle in the sun. Wonder all you want, though. It doesn't make a bit of difference. That was the knowledge I took with me into this next experience and it carries me through every moment of it. I often say that "knowing is better than not knowing" but when it isn't possible to "know", there is no sense in imagining what could go wrong (or right). Just living through the process is the best we can manage and things always turn out as they were meant to in the end anyway.
If you have ever known someone who has gone through the process of dying, you know that there is a look in their eyes, even in the most dire situations, where they would give anything to survive whatever it is that is taking them from this physical realm. There is a look of sadness and resignation, nostalgia and regret that is not spoken but understood. There are only rarely any moments of epiphany, those movie moments of sad good-byes or heartfelt apologies. What you get instead is a person who is silently willing themselves to live. And there is nothing wrong with that. Hope is a tangible thing when you are facing life and death struggles. You eat it, you breathe it. When it leaves you (and you know the moment it does) it knocks the wind out of you in a way you have never experienced before and you forget who you are and you forget that life is filled with grace. You find it again, eventually, but the loss of hope is something you never forget. What you do with that experience is part of the true test of living, of going on, and we all must do it in our own time, in our own way.
For me, I learned what that experience meant to me when a friend of mine posted on her Facebook page that her husband was in need of a kidney donor. He was about to start dialysis, a regimen he would continue daily for the rest of his life, until a suitable donor could be found. Nobody in her family was able to donate and they were asking for help. Having been through the experience of losing friend after friend after friend to illnesses for which there was no cure, I was struck by the fact that, in this case, there was most certainly something that could be done....not just to make him feel better.....but to save his life. The gift that I would have given any of my other friends I had lost the last two years I could give to him. I could keep that look from his eyes, I could keep him from losing hope and all that is wrapped up in that. I felt no hesitation. I did some reading, some research and called my friend and told her I would get tested for her husband. The testing process, I now knew, could take months and I could back out at any time I felt I needed to, so I promised to start, not knowing where it might lead.
As I sat in the waiting room at the lab, I felt like I was exactly where I was supposed to be. A bit battered and bruised from the fall, I understood that it was just a part of the process and I was sitting exactly in the right spot, comfortable now, resting, awaiting what might happen next. The year before had been an incredible journey of discovery and living out my lifelong dreams. Now I was going to take an unexpected road, cast aside my deepest fears and venture into a new part of life that included, hopefully, compassion and love and healing and.....life. It was time for some happiness, time to see what might happen to those eyes of hopelessness when hope entered them again. I had a feeling it would be worth the bruises and the scars, but I had no idea that the greatest part of the journey was inside my own mind and heart. That was, after all, where the scars of the last two years were deepest. Maybe I could save two lives in the process. I was willing to try anyway. To me it seemed like an easy choice.
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