I never thought much about kidneys or organ donation. In fact, It was completely off my radar until we realized that my husband might have a gene mutation that inevitably leads to kidney disease. Nate, my husband, had two uncles with kidney disease who received transplants from their siblings. It was believed that only men got the disease, and it could not be passed down through the women. Since it was Nate’s mom’s family, we thought we had nothing to worry about. When I first met my husband, even after we had children together, I never knew that he carried this gene. When Nate’s older brother started having signs of kidney failure, we realized that the dreaded gene could be passed down through the women.
Matt, Nate’s older brother, received a kidney from his wife before he ever needed dialysis. Ryan, Nate’s younger brother, began to have kidney problems about seven years ago. We realized that he needed a kidney transplant shortly after that, but never really got the ball rolling until he began dialysis two years ago. At that point, family and friends began to come forward to donate. For one reason or another, they got screened out. Meanwhile, a genetic test was developed that would show the marker for kidney disease. The cousins were tested, and Nate was as well. Unfortunately, he tested positive. Fortunately, I share the same blood type as my husband, so I promised him that if I could, I would give him my kidney.
Meanwhile, Ryan was getting sicker and sicker. Dialysis was keeping him alive, but the quality of his life was terrible. He was working full time and doing dialysis ten hours each night. When their cousin Sarah was eliminated as a donor candidate because of kidney stones, I began to seriously consider donating a kidney to my brother -in -law. The only problem was that I had already promised my second kidney to Nate, and we weren’t sure who else might be able to donate. After a heart to heart conversation, Nate and I agreed that although he would need a kidney someday, Ryan needed one right now and I should move forward.
The screening process seemed to take forever. There were times where I thought I would be eliminated due to one thing or another; a few episodes of irregular heartbeat, a few too many urinary tract infections. Finally, in early August, I got final approval to donate. We scheduled surgery for September 17th, 2019. I would start the school year with my students and then take six weeks of sick leave for my recovery.
I had some concerns about how donating a kidney might affect my running. I am an avid runner. It isn’t just a hobby or way for me to stay healthy. Running is how I stay sane. When I get grouchy, my family will usually tell me to go for a run because they know it is the best way for me to feel better and be in a good mood. I have been running for about 30 years and completed eight marathons, including Boston, as well as numerous half marathons and lots of relay events with my friends.
As soon as the final decision was made, I started to get really nervous. I hadn’t had major surgery before, and I convinced myself that something would go wrong. As the day approached, I became more and more anxious. With two weeks to go before surgery, I decided to reach out to another woman who had donated the year before and who lives in Portland, is about my age, and is also a PE teacher. I thought that her experience would probably be comparable to what I might expect to experience. I spoke to her on the phone for over an hour, and it was not reassuring. She had complications including adhesions and was still not back to her normal self even a full year later. She kept emphasizing that the doctors don’t really tell you just how traumatic the whole experience can be.
Now I was terrified. The conversation did not reassure me, but I was determined to move forward and donate anyway. I figured even if I had a bad outcome, I would be helping Ryan immensely.
About two weeks before surgery, I went backpacking with a dear friend and our daughters as my “last hurrah”. We talked as we hiked, and as usual, just getting outside and working my body made me feel a little better.
A few miles in, we saw two people bounding down the trail toward us. They complimented us on our strong daughters who they had just passed. My friend noticed that the two hikers wore matching t-shirts that had a picture of a kidney and the words, “Northwest Kidney Crew”. She immediately asked, “what’s with the shirts?”. We were floored by their response. They were both kidney donors. In fact, it was KDA founder Tracey Hulick and another major kidney donor advocate based in the Northwest, Bobby McLaughlin! Immediately I began firing questions at them. I told them how scared I was and they reassured me that, although there can be a range of outcomes, most kidney donors do very well after donating. As a runner, I was so heartened when Tracey informed me that she was back to ultra running a year after donation. Bobby was an avid hiker and told me that he was back doing lots of miles within weeks of surgery. He was about seven months out at that point, and he showed me his scar, which I also really appreciated. I just wanted to see someone in the flesh who had a good experience and came out the other side looking as great as these two did!
I am not a religious person, but the fact that the universe put these two people literally in my path as I hiked in central Oregon, made me believe in some kind of higher power. They were the two people that I needed to talk to the most, and there they were, right in front of me, at the moment I needed them most. I knew then that I was doing the right thing and it truly felt like it was meant to be.
Bobby and Tracey also connected me to someone in Portland, Melissa Anctil, who had surgery at OHSU. She even had the same surgeon who was scheduled to do my transplant. I called her when I returned from our backpacking trip. She was also incredibly reassuring. She asked me questions about my history, and by the end of our conversation she said, “Amy, I predict you are going to sail through this.” I kept repeating Melissa’s words to myself as the day of surgery neared and my anxiety spiked again. I figured she must know what she was talking about.
The morning of surgery arrived, and Nate took Ryan and me to the hospital at about 5 AM. In the lobby, Ryan gave me a tearful hug and said “thank you” as I headed down to the pre-surgery area. My mom and sister met Nate and me there. As they sat with me, my mom looked a little nervous too. I reminded her, just as I reminded myself, that I was heading into surgery because everything in my body was right. Normally, people go into surgery because something is wrong and needs to be fixed, but I had passed all the tests for a reason, so I must be in very good health.
I also was getting the red carpet treatment at the hospital. My anesthesiologist was the father of one of my son’s ultimate frisbee teammates and my surgical nurse was the parent of one of my students. Both had rearranged their schedules to take care of me in the hospital and they were both there to meet me in the pre-surgical area. As nervous as I felt, I knew I was in good hands. As soon as they started the “champagne in the vein”, I had no worries.
I awoke in the recovery room with unfamiliar faces. They sent me upstairs to the wrong room on the 14th floor instead of the fourth floor. After spinning me around on the gurney and moving me over bumps in and out of the elevators, I was pretty nauseous by the time I got to my room. Fortunately, it passed and I managed not to throw up, which seems like about the worst pain one could have after abdominal surgery. My family was there for me and told me that the nurse said my kidney looked “perfect”. Ryan’s surgery was off to a good start, and after several more hours, he also emerged successfully from surgery. His new kidney was already doing its job and I felt proud.
I had lots of really nice visits during my stay at the hospital from many family and friends. One of the highlights was when Melissa Anctil walked through the door with her twelve-year-old recipient, Branson. They told me their story and said that they shared a stuffed animal Snoopy, that they gave back and forth whenever one of them needed a little extra comfort. They brought me a stuffed panda bear to share with Ryan during our recovery and beyond.
Seeing Melissa and Branson and how well they were doing a year out from their transplant was incredibly reassuring. They clearly had a special bond, and they both looked super healthy. It was such a thoughtful thing for them to come see me the day after my surgery. Once again, I got a little tearful as we spoke together about our experience. They also offered to visit Ryan, who was in the hospital room next door and give him some encouragement as well.
After two nights in the hospital, they were ready to send me home. I still felt like I needed plenty of help, but fortunately, my sister was able to come home with me as Nate stayed in the hospital to look after Ryan. A couple of days later, Ryan came home and we recovered at our house together for the next six weeks.
Throughout this journey, we were cared for by so many people. My friends, family and school community took such good care of us. People brought meals for my family several times per week, kids wrote me jokes, friends brought me books and magazines. I received loving messages from friends near and far.
I was scheduled to run a relay about two and a half weeks after my surgery because I signed up for it long before I knew when or if I would donate a kidney. I would not be able to run, but I wanted to feel like I was still part of the team and went to central Oregon to cheer them on. My friends on the team ran a few extra miles to fill in for me, while I got to cheer them on and run alongside my friend Heather for the final quarter-mile. At the finish line, I proudly wore my Northwest Kidney Crew T-shirt that Bobby gave me to match the one he and Tracey wore when I spotted them on the trail the month before.
My return to running has been pretty easy. I have been gradually increasing my mileage. I walked every day, beginning on the second day out of surgery, and began jogging about a month after. I felt pretty fatigued when I tried to run over five miles, until about three months post-op, at which point I was back to my normal self. I just have what I call “old lady problems” now; a sore hip or a tweaked knee, but nothing that has stopped me from running.
Donating a kidney to Ryan was an act of faith. My husband will need a kidney in the not so distant future. My children may need a kidney as well. My niece and nephew are being tested to see if they have the gene mutation as well. I believe in my community. I believe in the abundance of the universe. Bobby and Tracey were put in my path to show me that there are plenty of people who are willing to help. There are enough kidneys. Everyone will be okay.
At the end of February, I ran my first race since donating, the Frosty Moss Relay on the Olympic Penninsula. There were lots of hills, mud and cold weather miles. My teammates and I each ran three legs during the course of the day. It wasn’t easy, but my body came through for me once again and we were able to finish just after dark. As I ran my final leg and looked up at the stars, I felt such immense gratitude, for my health, for my dear running buddies, and for a world with so many good people.
Now our world faces a new challenge. Every day we face uncertainty as more and more people fall ill with COVID-19. I am again filled with gratitude as I see so many organ donations being put on hold and people in need getting sicker and sicker. Ryan and I are so fortunate that we completed this process six months ago and are both fully recovered. So many others do not have the lucky timing that we did.
I am reminded once again of the fears that I had prior to kidney donation. The fear of not knowing what’s next is hard to deal with every day. Tracey and Bobby might not be just around the corner on this path, but there is still hope. I see great acts of kindness all around me every day and continue to have faith in what the future holds.