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.
Subscribe to:
Posts (Atom)