As a resident at Seattle Children’s, Dr. Alex Kula brings a unique perspective to patient care: his own history as a youth with a serious illness.
Here Alex shares how his uncle gave the ultimate gift, and why the experience drives him to help sick children live healthy and fulfilling lives.
I was 15 years old and a normal teenager: living in Phoenix, hanging out with my friends at school and running with the cross-country team.
Then a mysterious autoimmune storm interrupted the normalcy of my life. It left me with type 1 diabetes, ulcerative colitis and an inflamed liver. Blood tests later revealed primary sclerosing cholangitis (PSC), a disease of the bile ducts, as the cause of my liver inflammation.
Prior to this, I had never really been sick — which was fortunate, considering how much I hated to go to the doctor. However, I quickly came to appreciate the complexity and wonder of medicine.
My family, friends and doctors worked tirelessly to manage my conditions while keeping me in school and on the cross-country team. Their efforts minimized my feelings of being different from my peers, a dreaded fate for any teenager.
At age 19, life became more complicated when my PSC quickly progressed from an underlying issue to serious liver failure. Anxiety and isolation became my constant companions as I left the University of Arizona to return home to my family and hope for a lifesaving liver transplant.
I waited atop the transplant list for several weeks. Despite the severity of my illness, no livers became available due to a scarcity of organ donors at that time. Therefore, my physicians turned to the option of living donation. It didn’t take long for extended family and friends to step forward and be tested as potential donors.
‘A great sense of relief’
Blood tests, imaging scans and underlying illnesses disqualified each person — 15 family members and friends had been tested, with no luck. All the while, my lab tests continued to worsen.
The only remaining option was my uncle, Jim Kula. Flying in from out of town, Uncle Jim became the 16th person to be tested. He was a perfect match.
The results gave me a great sense of relief from the stress stemming from my worsening condition, and removed the uncertainty about whether I would find a suitable donor.
Talking to Uncle Jim on the phone shortly before surgery remains a distinct memory. All of a sudden, I felt choked by tears while trying to express my gratitude for the suffering he would endure for me.
He stopped me before I could get any words out, saying, “Alex, you are never allowed to thank me for doing this; it’s something I want to do.”
The transplant took place on Feb. 21, 2007. Needless to say, transplantation between a living donor and a patient is a serious and complicated surgery for both parties.
My uncle made a slow, but full, recovery. However, due to the level of my illness, my post-transplant period was rocky. I spent most of the next three months in the hospital.
With the love and patience of my family — and the determined work of the medical team, led by transplant surgeon Dr. David Mulligan — I was able to return to college that August.
‘My serious illness was not my life’
The many challenges I faced during my intense medical experiences inspired me to become a physician. That, and the fact that you can only play in so many unsuccessful bands before realizing a career as a rock star is unlikely.
After graduating, I packed my bags and headed east to attend medical school at Yale University. In what can only be described as a serendipitous moment (or a great commitment to patient care!), Dr. Mulligan was appointed head of transplant at Yale during my second year.
Working with him as a student, rather than a patient, reminded me of where I came from and what I wanted to accomplish. People like Dr. Mulligan played an important role in giving me the opportunities I’ve had. Because of that, I want to give back and create those opportunities for other people.
When I think back on the medical professionals who maintained my spirit and shaped my interests in the hospital, I am eternally grateful for many things.
My physicians inspired me with their scientific approach, building a kindred curiosity in me. Nurses buoyed my spirits and encouraged my ambitions in the most trying of moments. They also advocated tirelessly for me in times of illness and uncertainty. Certified nursing assistants and other medical staff provided friendly care and good conversation during the tedious days of my hospitalizations.
Even though everything in my life seemed to swirl around my serious illness, my serious illness was not my life. Understanding this was a crucial realization, and the source of my motivation to practice pediatric medicine.
‘A sidebar to the greater story of their life’
I decided to train at Seattle Children’s because I saw a place where I could relay this message to children and families going through their own challenges. Dealing with a serious illness is a major part of a patient’s life, but it should never be the defining part of their life.
It is so important that we remind ourselves, our patients and their families of ambitions beyond the hospital doors — noting that a child’s time in the hospital is a sidebar to the greater story of their life.
I want all patients to pursue their dreams, just as I continue to chase my dream of being a rock star. (Please contact me if you are in need of a guitarist for your band!)
I’ll conclude with a question I am frequently asked: Does it ever feel strange knowing that my uncle’s liver is in me?
My first response is to joke that it made me 51% Polish, since I have more of my dad’s family in me now.
But in all seriousness, it feels completely natural, which I attribute to the love and kindness of my uncle. The context he gave to the process made the transplant less of a gift or donation and more a natural transfer of opportunity and purpose — which I work to share with the next generation of patients every day.