From Sharing a Desk to Sharing a Liver
Written by John Paulsen, liver transplant recipient. Edited by CC Cunningham, CKF Program Manager.One spring day during my junior year of high school, the usual lunchtime banter was abruptly interrupted by one of my friends exclaiming, "Oh my god, Paulsen—your eyes are yellow!"This initial discovery led to months of concern and confusion, going from doctor to doctor to figure out what was wrong, and rapidly losing weight as these medical professionals did their best to diagnose me. Towards the end of the summer, they determined that I had autoimmune hepatitis, a rare disease where the body attacks the liver. With this diagnosis, the doctors informed me that there was a 10% chance I'd need a liver transplant at some point in the future. While this was a low percentage, I knew it certainly wasn't impossible. I was immediately put on a regimen of heavy steroids to help strengthen my liver, which allowed me to gain back over 30 pounds onto my small, skin-and-bones frame. However, during the months spent diagnosing my condition, my liver had already experienced a significant amount of scarring.Over the next 13 years, I managed to get through college, attend countless happy hours, and celebrate dozens of weddings without ever having a drink of alcohol—in order to protect my liver. The autoimmune hepatitis was in remission at this point, thanks to nurse practitioner Kathleen Barrett and my hepatologist, Dr. Mohamed Hassan, at the University of Minnesota Medical Center. Everything seemed to be getting better.However, towards the end of 2011, I started uncontrollably losing weight and I knew something was wrong. I was diagnosed with ulcerative colitis, a disease of the lower digestive system in which your immune system mistakenly attacks the wrong thing—similar to autoimmune hepatitis. Instead of attacking harmful bacteria in my digestive tract, my immune system was attacking digested food and healthy gut bacteria. This additional diagnosis led to annual check-ups to catch any potential issues early.
In January 2013, my wife Elizabeth and I returned from a vacation in Miami and I went to see my doctor for one such annual check-up. My gastroenterologist, Dr. Christopher Shepela, informed Elizabeth and me gently but directly that I had primary sclerosing cholangitis (PSC), a progressive disease that causes inflammation and scarring of the bile ducts and leads to serious liver damage. Dr. Shepela went on to say that I would need a liver transplant sometime in the next two to ten years. Elizabeth and I were devastated. We spent the next six months in a fog, coping with what this meant for us and what our options were.By the fall, Elizabeth and I finally reached a point of acceptance over this and what it all meant—although the two-to-ten-year timeframe we were given made it difficult for us to make any long-term life plans, like starting a family. I held my breath during every doctor's appointment, waiting to hear how far my condition had progressed each time. My medical team had told me that my body would eventually begin outwardly reflecting the severity of the PSC and, by mid-2015, it was. I started retaining fluid in my belly—this particular symptom is known as ascites—and its onset prompted the doctors to recommend I go on a low-sodium diet, in the hopes of cutting down some of the fluid retention.
Towards the end of 2015, the ascites became outwardly noticeable and I grew increasingly uncomfortable by the week. Elizabeth and I had been tight-lipped about my PSC since the diagnosis, outside of close friends and family, but it got to a point where we both needed more emotional support. We knew that living liver donation was an option—where almost half of a healthy, living donor's liver is taken out and transplanted into the recipient in need. Those respective halves in both the donor and recipient then regenerate back to their normal size. Living donation was a shining ray of hope for us, especially since the recipient has a better chance of survival if they receive half a liver from someone who is alive and healthy.We decided to go public with our situation and made a plea for any prospective donors who matched the universal living donor requirements (healthy, over 5'7", O blood type) to contact the University of Minnesota Medical Center and apply to be a living donor.The year that followed was a difficult and exhausting one. By the end of the summer, the ascites had ballooned to a point where I had to get my belly drained regularly—there was one instance where doctors drained the liquid-equivalent of 18 cans of pop from my belly.On October 16th, Elizabeth and I came home from a much-needed long weekend away and I was feeling physically awful—the PSC had gotten so bad that it made traveling a taxing exercise. Elizabeth and I curled up on the couch and I tried to regain some strength by lying still.Then came a knock at the door. I looked out the window to see my two friends, Bryan and Jessie, beaming widely from ear to ear.Bryan, Jessie, and I had all worked together at a mortgage company for several years. I started there when I was just 22 years old and they both took me under their wing: Bryan patiently answered my (seemingly) thousands of questions and Jessie made sure no one picked on the freshman employee.Shortly after the mortgage company folded, Elizabeth and I got married and adopted a pug named Moe. Bryan’s parents owned a mom-and-pop dog-grooming business, so I had the luxury of seeing Bryan every so often. One particular time after Moe was groomed, Bryan and I chatted in his parents’ backyard while Moe wandered around the yard. At that moment, Moe mistook their pool cover for a solid surface, stepped onto it, and slipped underneath the surface. In an instant, Bryan jumped into the pool—clothes and all—and rescued Moe from drowning. One Paulsen life saved already……Which leads me to the best part of the story. As soon as Bryan and Jessie came in, they couldn't contain the joy and excitement in their voices as they delivered the news: Bryan wanted to donate a portion of his liver to me. At that moment, I have never been so happy in my entire life—neither has Elizabeth. All we wanted to do was hug them both as tightly as we could. It was so unexpected, but the best part about hearing the news was how excited they were to tell us. Elizabeth and I hadn’t seen them in several years and frankly, we had no idea they even knew about my medical situation. We discovered they had found out through Facebook and, without any hesitation, they both decided that they wanted to help. Bryan instantly applied to be my living donor and he was a perfect match.
The surgeries were planned for December 7th at the University of Minnesota Medical Center. Bryan and I went in at the same time. My recovery was made successful by the amazing doctors and nurses at the University of Minnesota and by my wife, who spent the entire 11-day hospital stay by my side. The pain quotient was certainly higher than I’ve ever felt—I quickly realized that I use my core muscles for pretty much everything as I experienced pain with every movement.By the third day post-surgery, I was able to walk down my unit's hallway and back, with the aid of my wife or a nurse. I gradually gained this ability back until my discharge, at which point I had built up enough strength to walk around the entire floor three to four times a day. However, my main goal for Day Three was to pee—that's a poignant sign that the plumbing still works after a major renovation to the pipes. Once I received such a sign, I was “promoted” from the ICU to the transplant unit.
The nurses on the transplant wing became like family to Elizabeth and I. Two nurses, Margaret and Shelly, would always stay in our room a little longer than they had to, just to talk to us. Margaret had a raspy voice and was a big Seinfeld fan—we clicked with her immediately; Shelly had essentially trained the entire team of nurses during her lengthy tenure working on the transplant floor and her kindness knew no bounds. We got to know the two of them quite well during my eight day-stint on the transplant floor and we are eternally grateful for their care.The rest of my time in-hospital was focused on getting plenty of rest, building the skills I needed to get myself in and out of bed, learning the ins and outs of all my new medications, and getting my blood sugar properly stabilized. I received a few visitors, one at a time, during my stay (apologies to my buddy, Alex, who came in for a visit and I proceeded to promptly fall asleep mid-conversation). The hospital food was honestly delicious; I was thrilled to be done with my low-sodium requirements and back to eating a more normal diet (my mom would even venture out from the hospital sometimes to grab dinner for Bryan and me!).
Towards the end of my stay, I began to feel like my progress in recovery was where I wanted it to be. I was sent home on December 17th.This entire process taught Elizabeth and me immeasurable lessons about the human spirit. We will forever owe a debt of gratitude to Bryan and Jessie—their generosity quite literally saved my life. Bryan is doing great today—he just celebrated his 42nd birthday. We still to get to see Bryan and his family every couple of months. He and his family have developed a strong bond with both my parents and Elizabeth’s parents too.I owe the same amount of thanks to the selfless individuals who applied to donate a piece of themselves on my behalf but, for whatever reason, were medically incompatible. I don’t know who most of them were because of the donor-recipient protocol, but broadly and sincerely, they have my thanks forever. I can only promise to offer that same level of selflessness and generosity unanimously and whenever possible.Since first learning that I would need a liver transplant six years ago, Elizabeth and I so often relied on the strength drawn from others: all of the big and little interactions that helped brighten our days; all of the regular check-ins, gestures of kindness, supportive words, phone calls, and concerns—being able to talk about our ordeal with others gave both Elizabeth and I a huge sense of relief because we were allowed to be so open and vulnerable in a time of great uncertainty.To the living organ donors—the most selfless among us—to Bryan and Jessie: your generosity knows no bounds. I am still in awe over the amount of kindness and pure human goodness it takes to do something like what you did for another person.
To the silent champions of organ donation: the caregivers—in this case, my wife Elizabeth—thank you. The lowest points of my illness would have been unbearable without her. When my physical health was at its absolute worst right before my transplant, Elizabeth shouldered that burden without complaint. She drove me to all of my medical appointments and tried to make me as comfortable as she possibly could when I was dealing with tremendous discomfort and emotional unrest. Through it all, she never gave up hope that we could beat this disease together and come out better on the other side. For everything, Bitty, thank you. I love you.Elizabeth and John recently gave birth to their first child, a baby boy named George, on September 18th, 2019.