As I walked the skyway on my way to the hospital on the second day of testing I heard a child's voice cry out with excitement. "It's moving!" he said. "It's moving....the red one!"
The skyway was filled with Cleveland Clinic employees on their way to work, patients, walking from the parking deck to their appointments, golf carts whirring by with other patients who were unable to walk, maintenance men tending to the skyway's speaker system which ordinarily piped in soothing, new-agey music which was now noticeably silent. Among the muffled conversations around me the excitement of the child's voice felt hopeful and alive. I looked ahead and saw the source and I smiled, but it was also the source of much reflection that day and an image I will probably never forget. Toward the end of the skyway, where the street meets the hospital's Glickman Tower, stood a mother bending down behind her child, both of their faces filled with wonder and excitement, looking East out toward the sunrise. As I walked, I followed their gaze with my eyes and saw the source of their excitement. In the distance, probably three blocks from the skyway, were half a dozen towering cranes, even in January, working on construction of The Cleveland Clinic's new Cancer Center. I had passed this scene the day before a dozen times but never really paid much attention to it. It wasn't until I was alerted to the activity by the child that I noticed that construction hurried along on this new center....even in the middle of the winter, even this early in the morning.
Standing behind him, her face as eager and animated as her son's, the boy's mother pointed excitedly. "Look, look! The blue one too!" she said.
"What?" said the child, scanning the horizon for the new excitement.
"Right over there," she said, patiently. "Right next to the green one. The blue one is spinning around!"
"Oh yes!" said the child, as thrilled to see it as to have this connection with his mother. He looked back at her proudly and with a look of tender joy.
It was just a year and a half before this that I walked this same skyway on my way to visit my mother in law for the last time. I couldn't help but think of her......all mothers really. It is after all from the eyes of our mothers that we first learn to see the world. From our earliest age they guide us to what is important, they teach us, they shelter us and they share joy with us. This simple gesture, a mother and son, was more for me this day than this one private moment. There was a universality to the gesture that struck me and stuck with me for the rest of the day and clearly still sticks with me. It felt important and significant to me and I paused to honor my mother in law, my mother, my father and my good fortune for having been allowed to experience this connection in my own life over and over again since infancy. No matter what the day could bring I had been given this gift. I held it close to me like my own memories and I walked on into my future, across the threshold to something new and unexpected. I knew I wasn't alone. I was seeing the world through the eyes of everyone who had come before me and I was alive with purpose.
Saturday, January 23, 2016
Friday, January 22, 2016
Day One
5:30am. I have everything I need: my drivers license, my donor packet, some snacks and two liters of my own urine I had been collecting for 24 hours in a jug. I had spent the night at my parents' home to be closer to the hospital and they were kind enough to free up some space in the fridge for my specimen. Parents generally don't flinch much when you have unique requests. You have conditioned them, after all, to expect that from you.
So, I'm on the road for my trip to the hospital. I have about a dozen appointments scheduled between 7 am and 4pm. I have been fasting since 5pm the day before. I can't eat before my blood tests and again four hours before my CT scan which is scheduled at 1pm. I have very little hope that I'll be able to squeeze even an apple in during this hectic day but I am fortified in other ways.....and also a little nervous. My nervousness seems to come mostly from the idea that I may not physically be "up" to the demands of donation. These are rigorous and thorough tests. They don't want someone donating a kidney who may suffer from the lack of one later in life. I knew I was in good health, took no medications, was generally fit and emotionally stable (in relative terms) but these tests would tell me everything. The fear was not that I would find something wrong in myself so much as it was that some problem in me would not allow me to donate to my friend. The emotions surrounding this process are unpredictable, often unexpected and always important to feel on your way through.
I arrived at the hospital by 6:15 and went down to the lab to get checked in. My schedule started with an EKG, a chest X Ray and blood and urine samples. Everything at this stage went very smoothly. I got to relinquish my jug of urine as well as 22 vials of blood. Then it was upstairs for a GFR test. The GFR uses a radioactive isotope to trace the passage of fluids through your kidneys and then into your blood and urine. For the test I was injected with a tiny amount of the radiation and then was asked to return in one hour and two hour intervals to give urine and blood samples. In the meantime, I would continue with my appointments.
Next was a meeting with the surgeon. The surgeon was about an hour late for our meeting, but as the schedule was tight, my next appointment, a social worker, found me in the exam room and interviewed me there. The social worker is the first line of defense for people who may need more thorough psychological screening before donation. They want to assess whether you have a real grasp on what you are doing, what it means to you physically, emotionally and financially. I kind of breezed through this one and we spent a good part of the time talking about how much we love Puggles and dogs in general. I promised to bring my Puggle, Pablo, to the hospital so she could meet him which may or may not have been a bribe. I was in it to win it, after all.
Afterward, the surgeon finally appeared. He was unimpressed with my altruism and with me in general. I discovered during my two days of testing that a lot of people make it even this far in the donor process with absolutely no clue what they are getting themselves into. They think they will be compensated for donation (it is actually against federal law to compensate someone financially for donating an organ), they don't understand the seriousness of the surgery, they are nowhere near in the right physical shape for donation. Despite the thorough questionnaire we answer before we get to the stage where you are actually meeting a surgeon, a lot of people find their way to an early denial in this process. I imagined this surgeon had interviewed at least a dozen people who didn't make the cut for every successful donor interview. He asked me a few simple questions, looked me over like I was a Thanksgiving turkey and that was it. I usually like to have better chemistry with people who are going to be touching my internal organs but that clearly was not in the cards this time. I was just along for the ride.
My transplant coordinator was my next appointment. I had pictured her as a stern librarian-type but she was really more like the Cruise Director of organ transplants. She was friendly but clear about boundaries, smart but approachable. We talked for an hour, mostly things we had talked about already and things that were explained thoroughly in the mountain of brochures she had mailed out a week before my appointment. It was a good opportunity, however, for us to get to know each other. She would be, after all, my go-to person for all things transplant. She would be the one I would call if there was ever a problem so it was good to know we got along. She took my photo like I was signing up for a dating service, told me she was going to put it in my file and checked for my next appointment. The surgeon's delay had put me about an hour and a half behind schedule and it was her job to right the ship. At this point I still had four appointments to go; my CT scan, a "skin check" at dermatology, a meeting with an independent transplant liaison and the fitting of a 24 hour blood pressure monitoring cuff. Like any good organizer, my transplant coordinator knew instinctively what to do. She cancelled the final two meetings and told me to go to the CT scan and dermatology since those appointments are hard to get. She would re-schedule the other two for the next day.. I was given my orders and I was on my way down to the basement for the CT scan, then across the campus to dermatology. For someone who had no earthly clue what I was doing I knew that I was being taken care of by really smart, kind people. That was all I needed to know.
Aside from the fact that thy technician had a really difficult finding my veins for the IV contrast, the CT scan was pretty routine. I was more tired than anything and I was afraid I might fall asleep in the machine so having my forearm continually stabbed by a needle woke me up a bit. The whole thing took less than ten minutes but my schedule was so tight I only had a couple of minutes to get across the campus to dermatology....then I would be done for the day.
I had never had a dermatologist's appointment before so I was curious. I had literally run to the office so I was a bit out of breath and the woman at the desk took my name and sent me on my way to the exam room. The purpose of this appointment, the last of the day, was to give me a head to toe skin check, looking particularly for unknown melanomas which would make organ donation impossible. Any cancer, history of cancer or potential cancer generally rules you out from living kidney donation. There are any number of reasons for this but the most important one is that cancer treatment is hard enough on a person's body. Having to endure cancer treatment with less than an optimal number or organs just makes it that much harder. Most of the tests I had had to that point were cancer screening tests. Melanoma, however, can be both silent and ruthless so they take the time to look for it separately.
I arrived in the exam room and was instructed to undress completely and put on a hospital gown. By the time the doctor arrived I was compliant. In the most methodical and respectful way imaginable, the doctor searched every area of skin on my body, somehow not making me feel like I was a showgirl hanging from a stripper pole. The whole thing was over in less than five minutes, two of those minutes spent looking at a weird area under my eye that they determined was just weird and nothing dangerous. Free cosmetic surgery was not in the offing.
After that I was free. It was already almost 5pm and I was hungry, only managing to sneak a banana and some crackers on my way between the last two appointments. I was ready to head back to my parents' house for a home-cooked meal and a good night's sleep. It had been a long day. The second day was not as long or jam packed with appointments. I had made it through the worst, I figured. Tomorrow would be a piece of cake.
Afterward, the surgeon finally appeared. He was unimpressed with my altruism and with me in general. I discovered during my two days of testing that a lot of people make it even this far in the donor process with absolutely no clue what they are getting themselves into. They think they will be compensated for donation (it is actually against federal law to compensate someone financially for donating an organ), they don't understand the seriousness of the surgery, they are nowhere near in the right physical shape for donation. Despite the thorough questionnaire we answer before we get to the stage where you are actually meeting a surgeon, a lot of people find their way to an early denial in this process. I imagined this surgeon had interviewed at least a dozen people who didn't make the cut for every successful donor interview. He asked me a few simple questions, looked me over like I was a Thanksgiving turkey and that was it. I usually like to have better chemistry with people who are going to be touching my internal organs but that clearly was not in the cards this time. I was just along for the ride.
My transplant coordinator was my next appointment. I had pictured her as a stern librarian-type but she was really more like the Cruise Director of organ transplants. She was friendly but clear about boundaries, smart but approachable. We talked for an hour, mostly things we had talked about already and things that were explained thoroughly in the mountain of brochures she had mailed out a week before my appointment. It was a good opportunity, however, for us to get to know each other. She would be, after all, my go-to person for all things transplant. She would be the one I would call if there was ever a problem so it was good to know we got along. She took my photo like I was signing up for a dating service, told me she was going to put it in my file and checked for my next appointment. The surgeon's delay had put me about an hour and a half behind schedule and it was her job to right the ship. At this point I still had four appointments to go; my CT scan, a "skin check" at dermatology, a meeting with an independent transplant liaison and the fitting of a 24 hour blood pressure monitoring cuff. Like any good organizer, my transplant coordinator knew instinctively what to do. She cancelled the final two meetings and told me to go to the CT scan and dermatology since those appointments are hard to get. She would re-schedule the other two for the next day.. I was given my orders and I was on my way down to the basement for the CT scan, then across the campus to dermatology. For someone who had no earthly clue what I was doing I knew that I was being taken care of by really smart, kind people. That was all I needed to know.
Aside from the fact that thy technician had a really difficult finding my veins for the IV contrast, the CT scan was pretty routine. I was more tired than anything and I was afraid I might fall asleep in the machine so having my forearm continually stabbed by a needle woke me up a bit. The whole thing took less than ten minutes but my schedule was so tight I only had a couple of minutes to get across the campus to dermatology....then I would be done for the day.
I had never had a dermatologist's appointment before so I was curious. I had literally run to the office so I was a bit out of breath and the woman at the desk took my name and sent me on my way to the exam room. The purpose of this appointment, the last of the day, was to give me a head to toe skin check, looking particularly for unknown melanomas which would make organ donation impossible. Any cancer, history of cancer or potential cancer generally rules you out from living kidney donation. There are any number of reasons for this but the most important one is that cancer treatment is hard enough on a person's body. Having to endure cancer treatment with less than an optimal number or organs just makes it that much harder. Most of the tests I had had to that point were cancer screening tests. Melanoma, however, can be both silent and ruthless so they take the time to look for it separately.
I arrived in the exam room and was instructed to undress completely and put on a hospital gown. By the time the doctor arrived I was compliant. In the most methodical and respectful way imaginable, the doctor searched every area of skin on my body, somehow not making me feel like I was a showgirl hanging from a stripper pole. The whole thing was over in less than five minutes, two of those minutes spent looking at a weird area under my eye that they determined was just weird and nothing dangerous. Free cosmetic surgery was not in the offing.
After that I was free. It was already almost 5pm and I was hungry, only managing to sneak a banana and some crackers on my way between the last two appointments. I was ready to head back to my parents' house for a home-cooked meal and a good night's sleep. It had been a long day. The second day was not as long or jam packed with appointments. I had made it through the worst, I figured. Tomorrow would be a piece of cake.
Sunday, January 3, 2016
Mending holes.....
As I prepared for the tests at the hospital a line from my play kept running through my mind. "Faster than you can mend the holes in the fabric of your
past, it is being unraveled from the other end, stitch by stitch." It seemed like an odd phrase to find its way into this unique experience. I had no conscious feelings of bringing anything from my past with me into this. I never thought that this process might be a way for me to fix something that was broken in me the same way that I was trying to fix something that was broken in my friend. Life, however, is complicated and we don't live our lives only in forward motion. We carry pieces from every age with us on our journey and sometimes we are made aware of their presence. The older you get the more you understand that these pieces are important. They are the victories or the mistakes, the joys or the heartaches that punctuate our lives.
As I walk the same halls where not long ago I walked hopefully, awaiting the good news that never came for someone very dear to me, I remember her and feel her presence at every turn. I would have gladly given her anything if it would have given her even one more day. I am surrounded by every stage in the regenerative process of life to death. It is overwhelming but beautiful in a way that speaks quietly, beneath the sounds of tears and laughter. There is spirit here. It fills the heart to overflowing.
Saturday, January 2, 2016
Holiday On Ice
My personal journey of becoming a potential kidney donor began at the beginning of October. By the time the initial assessment was completed and I told the transplant nurse that I wanted to proceed with the testing, six weeks had passed. The holidays were approaching and my plate was filling up with all of the normal things that happen during that time of year, so I was clear to the scheduler at the hospital that I wouldn't be able to come in for testing until after Christmas. I felt a bit selfish about the request since I knew my friend had now been on dialysis for several weeks, a process that left him attached to a machine that cleansed his blood for hours a day, five days a week. Truthfully, however, I had hoped to be further along in the process by this point but, despite the fact that transplants are life-saving, the transplantation process is not a matter of life or death in the grand scheme of hospital priorities. Heart attack, cancer, aneurisms, broken bones, concussions, all of those things that need immediate care are the energy that fuels hospitals. The constant flow of the dangerously ill is what feeds the machine of health care. Kidney transplants are serious but not usually emergent so we wait, while those in need of dialysis get it and those of us on the other end wait patiently for our turn to help.
I never really asked why my friend needed a kidney. Even though I was literally going to be giving a part of myself to him, it felt too intimate to ask why he needed it, what medical problem he was facing that caused his kidneys to fail. The truth of the matter was that it simply didn't matter. What mattered, in the most immediate way was that he was in need and he asked. I simply answered. Why I answered with "yes" is a something that maybe even I won't understand. It felt as though I had been driven to a spot in the road and recognized a strange place as my future home and asked to be let off there. Though unfamiliar, it felt comfortable to me and so I decided to drop anchor in this spot for a while. It wasn't so consciously done as a lesson but I knew there were lessons to be learned in the process so I opened myself up to that as well.
Thanksgiving approached and I waited for news of the scheduling of my two days of tests. Then it was almost Christmas and I still waited. I made several calls and was told that they were working on it. I understood that scheduling not just me but any number of surgeons, social workers, physicians, labs, nurses and procedure rooms must take some skill so I waited patiently, hoping to have this part over with as soon as possible so I could make my final decision. I waited and waited, then I got the call.
My appointments, they told me, were scheduled for the 5th and 6th of January and I could see the appointments online on my personal chart. I would, in addition, be getting a box which included instructions and other information. I wrote down everything they told me and got online, wondering to myself mostly why instructions needed to be sent in a box. Suddenly my chart was populated with two dozen appointments, crammed into two days, back to back with no time in between. Meetings with doctors, x-rays, CAT scans, blood tests, exams and informative meetings with the transplant coordinator. Suddenly, everything seemed very real. What I had agreed to do in the abstract was beginning to feel imminent. I won't pretend there wasn't anxiety because there was. There is, of course, a very real feeling that you are heading down a path that is unfamiliar and there is nothing but your family and friends to act as guideposts on this new journey. I told the people closest to me about the process I had started and they were supportive but cautious. They knew me well enough that I don't generally do stupid things and, when I do, it's pointless to try and stop me. I had no feeling whatsoever that this path, however, was not worth traveling. I had no sense that what I was doing was not possible. I already knew I was willing to do this. The real question to answer now was, would I be mentally and physically strong enough to endure the process and that is exactly what these two days of tests were going to answer for me.
A few days later I got my box in the mail. It included glossy brochures with confident people making informed choices guided by people wearing scrubs. I also got two free parking passes for the garage which momentarily felt like scant compensation for giving away a vital organ. Also included was a liter jug marked with "BIOHAZARD" tape. I had a feeling I knew what that was for but, as I read through the material in the folder, it was confirmed. Not only was I asked to collect my own urine for 24 hours, I was asked to keep the specimen jug in the refrigerator until I got to the lab. Something told me that walking out of my comfort zone this far was going to be interesting, and a little unpredictable. I shrugged, put the jug back in the box and got back to my regular life, remembering my friend who was attached to a machine five hours a day five days a week. Perspective is a wonderful thing if you can find it. How I could feel anything but lucky seemed impossible to imagine. Whatever I might face during those two days of tests I thought about all of the people in my life I had lost the last three years and the gift I would have given any of them if I could, the gift of more time. I understood now more than ever that I have been given that gift myself and it was up to me to use it in the best way I knew how. We all do that in our own way, or we should. This just happened to be the opportunity that was presented to me. I was ready.
I never really asked why my friend needed a kidney. Even though I was literally going to be giving a part of myself to him, it felt too intimate to ask why he needed it, what medical problem he was facing that caused his kidneys to fail. The truth of the matter was that it simply didn't matter. What mattered, in the most immediate way was that he was in need and he asked. I simply answered. Why I answered with "yes" is a something that maybe even I won't understand. It felt as though I had been driven to a spot in the road and recognized a strange place as my future home and asked to be let off there. Though unfamiliar, it felt comfortable to me and so I decided to drop anchor in this spot for a while. It wasn't so consciously done as a lesson but I knew there were lessons to be learned in the process so I opened myself up to that as well.
Thanksgiving approached and I waited for news of the scheduling of my two days of tests. Then it was almost Christmas and I still waited. I made several calls and was told that they were working on it. I understood that scheduling not just me but any number of surgeons, social workers, physicians, labs, nurses and procedure rooms must take some skill so I waited patiently, hoping to have this part over with as soon as possible so I could make my final decision. I waited and waited, then I got the call.
My appointments, they told me, were scheduled for the 5th and 6th of January and I could see the appointments online on my personal chart. I would, in addition, be getting a box which included instructions and other information. I wrote down everything they told me and got online, wondering to myself mostly why instructions needed to be sent in a box. Suddenly my chart was populated with two dozen appointments, crammed into two days, back to back with no time in between. Meetings with doctors, x-rays, CAT scans, blood tests, exams and informative meetings with the transplant coordinator. Suddenly, everything seemed very real. What I had agreed to do in the abstract was beginning to feel imminent. I won't pretend there wasn't anxiety because there was. There is, of course, a very real feeling that you are heading down a path that is unfamiliar and there is nothing but your family and friends to act as guideposts on this new journey. I told the people closest to me about the process I had started and they were supportive but cautious. They knew me well enough that I don't generally do stupid things and, when I do, it's pointless to try and stop me. I had no feeling whatsoever that this path, however, was not worth traveling. I had no sense that what I was doing was not possible. I already knew I was willing to do this. The real question to answer now was, would I be mentally and physically strong enough to endure the process and that is exactly what these two days of tests were going to answer for me.
A few days later I got my box in the mail. It included glossy brochures with confident people making informed choices guided by people wearing scrubs. I also got two free parking passes for the garage which momentarily felt like scant compensation for giving away a vital organ. Also included was a liter jug marked with "BIOHAZARD" tape. I had a feeling I knew what that was for but, as I read through the material in the folder, it was confirmed. Not only was I asked to collect my own urine for 24 hours, I was asked to keep the specimen jug in the refrigerator until I got to the lab. Something told me that walking out of my comfort zone this far was going to be interesting, and a little unpredictable. I shrugged, put the jug back in the box and got back to my regular life, remembering my friend who was attached to a machine five hours a day five days a week. Perspective is a wonderful thing if you can find it. How I could feel anything but lucky seemed impossible to imagine. Whatever I might face during those two days of tests I thought about all of the people in my life I had lost the last three years and the gift I would have given any of them if I could, the gift of more time. I understood now more than ever that I have been given that gift myself and it was up to me to use it in the best way I knew how. We all do that in our own way, or we should. This just happened to be the opportunity that was presented to me. I was ready.
Wednesday, December 30, 2015
Match Game
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.
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.
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.
Subscribe to:
Posts (Atom)