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Lessons Learned in Transplant

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Janet N. Scheel, MD
ISHLT Pediatric Transplantation Council Vice Chair
Children's National Health System
Washington, DC, USA

I changed institutions last year for the first time in over a decade. This sort of change often brings about an inclination to reminisce about the past. In this case my need to reminisce was not self-imposed but rather at the suggestion of UNOS who required a list of all my previous transplant experience prior to approving me as my new program's Transplant Medical Director. I didn't remember my patient's UNOS numbers but I had no problem recalling the names of all my transplant patients over the past 25 years. Although I sent UNOS a list of all my patients, it was the ones with the poor outcomes whose details I could most easily recall. It was then I realized my biggest lessons learned in transplant were from my patients.

My first patient as a new attending physician was JJ, a teenager with familial cardiomyopathy. His uncle had received one of the first heart transplants at the center where I did my cardiology fellowship. Like many early recipients, he did not survive long and consequently, JJ's mother was very hesitant to consider listing JJ for transplant. With the enthusiasm of a newly minted cardiologist, I reassured JJ's mother that we had learned a great deal in the preceding decade and that our outcomes were improving all the time. We listed JJ. In the era before mechanical circulatory support, we supported JJ with inotropes in the ICU while we waited, hoping he would remain stable enough to avoid ECMO. We were lucky to get a donor organ quickly and his immediate post- transplant course was uncomplicated. He returned to playing his beloved baseball. Nine months after transplant his mother called me to say he had abdominal pain. I told her to bring him to the hospital. Shortly after arriving in the emergency room, he arrested and was placed on the previously avoided ECMO. Things did not go well. He developed multi-organ failure and did not recover. I found myself at the bedside discussing withdrawal of support with his mother. I assured her that he would not suffer. She looked at me and said "Can we wait just a little while longer then since once he dies, my suffering will never end". I went to JJ's funeral and sat in the back. I watched his baseball glove being put in before the casket was closed. I left without talking to the family. I had told them that things would be better than they had been for his uncle. I was wrong. JJ taught me humility. He also taught me that when patients die, statistics and outcomes are meaningless to our families.

Another lesson came from VS, also a teenager. He received his heart transplant after presenting in cardiogenic shock and being placed on ECMO. His presentation did not allow time for us to get well- acquainted until after his transplant. Medically he appeared to be doing very well with no rejection and good cardiac function for over two years. Every time I saw him, he would say that he did not feel well with multiple vague complaints. I did many extensive evaluations and never found anything that would explain his fatigue and occasional aches. He assured me he was not depressed but said he had "just never felt well since the transplant". He eventually presented in cardiogenic shock with acute rejection. He had stopped taking his medications. He did not survive. The week prior he had told multiple family members as well as his pediatrician "if the question is ever raised, I do not want to have another transplant". In essence, he had committed suicide by non-compliance. I do not know why VS never felt well and I have never had a patient like him again. Before VS, I prided myself on listening attentively to my patients. VS showed me that although I am listening, I am not always hearing. VS taught me a good ear is sometimes more important than another test. I hope I have learned to hear these patients now.

The last patient's case taught me never to stop learning. I took care of AM for 18 years after his first heart transplant. He did great without discernible coronary vasculopathy or significant rejection. He received a second transplant for non-specific graft failure at 19 years of age. Initially he did great with no cellular rejection and great graft function. By the time of AM's second transplant, we had learned a lot more about transplant immunology and we closely looked for DSA and AMR. This testing, too, was negative so it seemed AM's second transplant would be long lasting. He died 11 months post-transplant with severe diffuse coronary vasculopathy. I had cared for AM for over 19 years. For a pediatric transplant physician that means multiple visits per year, multiple inpatient admissions and multiple soul-searching conversations with the family. I had watched him grow into a talented young man heading off to art school. I had celebrated his achievements and even his first detention (proof that he was living a "normal" life). When he was not telling very bad (actually, awful) jokes, he shared his plans, hopes and dreams. I so wanted to secure that future for him. I cannot tell you what led to his diffuse vasculopathy but I have not stopped looking. I continue to test his serum as we learn about new immune related factors that might explain rapidly progressive vasculopathy in a patient with none of the usual risk factors. I watched him grow over 19 years and then watched helplessly as he died. I did not sneak silently out of the back of his funeral. Surprisingly and at the family's request, I spoke on his behalf … I guess we had both grown up a little.

Whenever I start feeling cocky and think I know so much about transplants, I think of JJ, VS and AM. I thank them for their lessons of humility, attentiveness and inquisitiveness. Despite our progress, we still have a lot to learn. It is what I love about transplant medicine … and occasionally it is what I hate about it. Reminiscing makes me realize we have come a long way in pediatric thoracic transplant, but when we measure success by decades rather than years, we still have a long way to go.

I am excited about the future of transplant medicine and plan on continuing to learn as much as possible from every patient.

Disclosure Statement: the author has no conflicts of interest to report.

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