When I was born, all initial indications were that I was a normal bouncing baby boy. It became evident within the first few months that something wasn’t quite right with how I was growing. I was gaining weight really slowly, but besides that, there weren’t very many other clues to help them track down what was wrong. Quite simply, I wasn’t thriving. We lived in a small town in Pennsylvania and my pediatrician wasn’t associated with any major medical center. Numerous theories about my failure to thrive didn’t pan out, and as a long shot, I was tested for Cystic Fibrosis. It seemed a long shot because I didn’t exhibit the lung issues that are the hallmark of CF, and back then, CF was not a very well known disease. Well, the test came back positive right around my first birthday and it started quite a journey.
My parents knew absolutely nothing about CF. What they did know, what the doctors told them, is that I wouldn’t live past ten years old. In those days, kids with CF were often sheltered and pampered since they were ‘medically fragile’. Risk of lung infections meant most parents kept CF children somewhat isolated. My parents felt that if my life was going to be short, it was at least going to be normal. My childhood was filled with school and sports and friends and mischief like any other kid. Except for taking digestive enzyme pills to aid my weight gain (which worked), my life felt normal to me. I didn’t learn until I was an adult that my parents were scared and worried and sad every day that they would live longer than me. But, they pushed me. I was a curious, energetic, active child and my parents strongly encouraged me in every element and activity that I was interested in. I am so grateful I had parents that loved me like crazy but didn’t pamper me in the least.
I LOVED sports and was quite an athlete growing up. I had an odd case of CF. My lung issues didn’t materialize when I was a kid. This allowed me not only to live past ten, but excel at my athletic endeavors, and in school. My parents NEVER hinted that I would be limited by anything, although they were honest with me that I had “CF”. All the neighborhood parents had a bottle of my “pills” at their house in case I ate lunch or dinner there unexpectedly, but otherwise, I had a normal childhood. I still thank my parents every day for making it so.
I think my parents and I started to allow ourselves to think that maybe I had an odd case of CF, one that wouldn’t see the development of the fatal lung problems. That is how CF kills. Lung problems. Well, that dream was shattered when I contracted double pneumonia at 13 years old. Although I recovered from the acute pneumonia, my lungs were never the same. I started suffering from the hallmark repeated infections, decline in lung function, coughing up blood and loss of energy. The medications kept it, at least, in some sort of check. I pushed through illness and continued to play sports as best I could. I didn’t want to be treated differently, so I hid my disease as best I could. I held my coughs until after class, I struggled on my soccer and tennis teams so nobody could see I was struggling for air. Now that lung symptoms were showing up, and there is no cure, my prognosis was now that I might live to my late twenties. Maybe. Although people have since asked “Why did you go 1,000 miles away from friends and family to college when you knew you were going to die?”, it never occurred to me to give in. I had to have faith in fate and medical science that something… some miracle… would happen. I had to be prepared for life, and live life normally, so I applied to colleges as if I were going to live. Mind you, there was no cure and no lung transplants back then.
I always wanted to fly fighters for the military. There was no way that was happening, so I did the next best thing. I studied aerospace engineering at Cornell University so I could design them. My lung issues intensified and all sports faded away. I was getting winded walking up stairs, let alone across a bitter cold and monstrously hilly Cornell campus. I still hid my issues well. I had no energy, had a hard time keeping weight on, was 1,000 miles from home, but still had drive to push through it. My Mom was looking forward to having me come back home “to live my life out” after Cornell. She certainly didn’t word it that way to me, but I now know that was her thought. That plan got disrupted when I excitedly called her from Cornell during my Senior year and told her “Mom, I got into Stanford.. STANFORD… for grad school”. You do not turn down a chance to get a Masters in Aeronautics and Astronautics from a school like that! She encouraged me full force as did my dad. Well, I moved EVEN farther away from home, and got sicker, and coughed up more blood (which can be imminently fatal), but did well and got my degree in Rocket Science (as it is affectionately called).
Zoom ahead a few years, and I found my way to Seattle working as an aerodynamicist for Boeing. Yes, even farther from home, which thrilled my mom to no end (NOT). Because so few people lived into adulthood, I was being taken care of at Children’s Hospital by an amazing woman, Dr. Bonnie Ramsey, a famous, smart and compassionate CF doctor. But… an amazing thing happened during this period of my life. It was 1987 and I was reading the newspaper and I saw an article that Johns Hopkins performed a ground-breaking heart-lung transplant on a person with Cystic Fibrosis. My whole world opened up and changed in that instant. I had a glimmer of hope to live past 30. When life got hard, I now had something to pin a glimmer of hope on. A transplant.
Another big thing happened right around this period of time. They were starting an adult Cystic Fibrosis clinic at the University of Washington Medical Center. Bonnie Ramsey introduced me to Dr. Moira Aitken, a wickedly smart Scottish doctor, who was going to be the head of that clinic. This was another very fortunate development for me. Her aggressive attitude and scientific mind agreed with mine, and I was happy to be under her care at the UW. She is a doctor and researcher. I was a patient and guinea pig in every clinical study I could get into. But, I got sicker and sicker and it was clear the end was getting close. The UW was not doing lung transplants on CF patients, but I needed one. They were not common back in 1992. Moira wrote up my case and submitted me to a couple of lung transplant centers around the US, including Stanford my alma mater. I remember getting the call from her that all the other centers had turned me down due to a few “contraindications to transplant”. In short, I was too high risk a candidate and now had no hope. I literally felt I had been sent home to die. Little did I know she had not given up.
The University of Washington had started a new lung transplant program recently. Cystic Fibrosis cases were more complicated and the UW was not ready to put two new lungs into a CF patient yet. But, from what I can put together, discussions were going on behind the scenes, and one day she told me she set up appointments to have me come to the UW and meet with everyone on the transplant committee separately, including world renowned surgeon Thomas Marchioro. Although not stated, I sensed I was interviewing for my life. I think Moira convinced them I was a good candidate. Aggressive. Smart. Compliant. I knew I had to convince them of the same. On January 11, 1993 I got the call from Moira and her exact words were “There were a lot of things the committee didn’t like about your case.” My heart sunk and I knew I lost my last chance…. but she continued, “We have agreed to list you.” There are no words to express the emotions I felt. I called my Mom and she cried. On July 7, 1993, the call came in and I woke up on July 8 with two new lungs.
I was out of the hospital in three weeks. I hit tennis four weeks to the day of surgery. I won an A level tennis tournament within five months and rode the 200 mile two-day STP bicycle classic less than one year after surgery, and seven times since. Three of those times I rode the 200 miles in one day with the elite riders. I returned to work and finally got a pilot’s license. I went back to work designing planes, flying as an engineer for flight test, and started a successful business on the side. I moved to Brazil for a few years, grew my hair long, learned to speak Portuguese and LIVED. I got my MBA from the University of Washington and graduated valedictorian. I ran my first full marathon on January 11, 2009, sixteen years to the day I got the call from Moira that the UW would list me for a transplant. I now travel the world helping sell jets for Boeing, and have the most full active amazing life a human could have. Without the amazing gift of my donor family, the nurses, doctors, clinicians, pharmacists….. I would have been dead 18 years ago.
One day soon after transplant, when the intense flurry of activity was subsiding, a feeling came over me. I took a deep breath and it hit me, “these lungs were somebody else’s just two months ago”. It is difficult to convey the power of this thought to someone who is not an organ recipient. I HAD to know. The timing of this thought was timed well….. it was the day before a yearly transplant softball game, and this was going to be my first year. I met a woman at the game and expressed this intense desire to find out whose lungs I was breathing with. Although I didn’t know her, she knew me. She said I was famous because double lung transplants were new and rare and my rapid recovery made the rounds. She did something she probably shouldn’t have done. She gave me a hint… my donor was a 16 year old boy. I took this and ran. Lungs don’t last long outside of a human body, only hours. So, I guessed the donor had to pass away in King County, and had to die the day I got my new lease on life, July 7. I went to the King County death records and there it was, one sixteen year old boy died in King County that day. He was from Friday Harbor. Could he be my donor? I was blown away by just looking at his name, knowing this may be the person whose lungs I have. Thanksgiving weekend, how appropriate, I went up to Friday Harbor and stopped into the little quant newspaper office and got an old paper copy of the San Juan paper for July 7. There it was…. A 16 year old boy was found on July 6th with a self inflicted gunshot wound to the head and was airlifted to Harborview where he died the next day, July 7. I found my donor. I now have his year books from when he was in high school; I know what he looks like. I know who he was. I know my donor.
Fast forward to just last summer. I am now a pilot and often fly friends up to Friday Harbor for lunch, kayaking, whale watching, enjoying the amazing scenery. One beautiful day last July, I flew up with two friends who know my story, and we rented mopeds to zoom around the Island. I asked the lady at Susie’s mopeds if there were cemeteries on the Island. She said there is pretty much just one up at the old church, and she gave me directions. The three of us found it and I explained that I had no clue if my donor was buried there, but I told them his name and we split up and started looking. It was an amazing old, idyllic place right out of the turn of the century. After about 20 minutes, I was feeling bad because we were paying by the hour for these mopeds and I was costing my friends money. They would not give up. Finally my friend yelled, “Ken I found him.” I walked over and never expected to be so overcome with emotion. I saw his name on the headstone, and I saw his date of death. July 7, 1993. That is truly the moment that the intimate, life and death, miracle connection between he and I hit me. The emotion was completely unexpected. My friends stood there in silence with me, crying as well, and then backed away and took a picture I call “gratitude”. Me honoring my donor.
One element of this whole experience is I feel the need to ‘give back’. I talk to patients and families considering transplant, I donate time and money and speak for numerous charities. I thank nurses and doctors every chance I get, even ones unrelated to my care. They spend their lives making stories like mine possible. They really are miracle workers. I was on my deathbed, literally, and the system worked its magic and gave me the life I have now. Winning the lottery pales in comparison. Everyone involved in the miracle of transplantation, from donor families to medical professionals, are miracle workers.
I spent my life fighting. I fought to live until ten. I fought to breathe and appear normal through high school classes and sports. I fought my way through two hard universities studying a hard major, aerospace engineering. I fought trying to hold down a demanding career while getting sicker. I fought to even be listed for a transplant. There is no way I would have won the fight if the the amazing, selfless, hard-working, compassionate people of the whole transplant community and network hadn’t stepped in to help. “Thank you” seems so inadequate.