Robert A. Montgomery, MD, DPhil, FACS
NYU Langone Transplant Institute, NYU Langone Health
Three weeks before my heart transplant in September 2018, I was lecturing at a transplant meeting in Matera, Italy. It was there that I suffered 4 ventricular tachycardic arrests, one after the other. The next morning, I signed myself out of the tiny hospital in Matera against medical advice with an IV in my arm and boarded a commercial flight back to the U.S. accompanied by a friend who carried a fist full of pre-loaded resuscitation syringes, compliments of the worried Italian doctors. I was rapidly evaluated and admitted to the NYU intensive care unit to wait for a new heart. I had an RO1 grant due the day after my transplant. My first call after my surgeon offered me a new heart at 4 a.m. on September 20th was to my co-PI letting him know he and our staff would have to get the grant across the finish line.
Within days of my transplant, I began making decisions and doing academic and administrative work from my hospital bed. I would meet with my assistant each day and we would go over essential items that needed to be acted upon. I was 10 days in the hospital and upon discharge began a routine that would continue for the next 2 months: blood draws, heart biopsies, doctors’ appointments, and cardiac rehabilitation were scheduled early in the morning, followed by meetings, rounds, writing, emails, administrative and academic work until about 2 p.m. I was privileged to be able to get my blood draws in my office, avoiding having to line up at the phlebotomy lab door at 7 a.m. next to my patients. The transplant clinic and cardiac catheterization suite were a few floors above my office and the rehab gym was a few blocks down the road. Mid-afternoon I would go home and rest. Just before Thanksgiving I began working full days. A month later, I was seeing patients in clinic. My nurse practitioners and doctors stopped by my office to check on me and answered my texts at all hours of the day and night.
This is hardly the typical story of a transplant patient, with one exception. I am now 8 months out from my transplant and I am still unable to operate, the part of my job that, in my mind, defines my career. This is not because I am debilitated; on the contrary, I am stronger and more fit than I have been in 20 years. It is not because I have had rejection episodes or complications. My post-transplant course has been relatively smooth. I am not doing an essential part of my job because I am experiencing a side effect that almost all of our patients have to deal with but rarely talk about: a tacrolimus tremor.
My administration and colleagues have been very understanding, certainly far more so than our typical patient’s bosses and co-workers. Well, actually, the inconvenient truth is that most transplant patients do not have bosses or co-workers because only a minority of them actually return to work after their transplant. For kidney transplant patients who were not working before their transplant, there is a 92-94% certainty that they will not return to the work force, and yet I used to smile at them at a follow up visit and say, “now, go back to a normal life.”1 They will go back to life and that is an immeasurable gift, but only for a minority of patients will that life be “normal.”
I remember doing a second kidney transplant for a woman in her 20’s who was highly sensitized. She had been ill most of her life, in and out of hospitals and on dialysis. With a lot of help she had managed to finish high school. After her successful transplant, which involved a complex desensitization protocol, I triumphantly asked her what she was going to do with her new life. She told me she was going to enroll in college in the fall and become a nurse. Just before Thanksgiving, I saw her at a follow-up appointment and asked how it was going. She cast her gaze downward and said, “Not so good, Dr. Montgomery. I had to withdraw from school.” She began to cry, “No one ever expected anything from me and now everyone thinks I should be able to do anything. I have been so depressed.” Upon further discussion, it became clear that her dialysis days had been largely replaced by doctors’ appointments and blood draws, and although she felt better, she had never really needed to develop good time management skills. Many of our patients have been developmentally stunted by chronic disease and have somewhat chaotic lives as a result, and when their transplant happens they are ill-equipped to jump back in.
For the purpose of measuring the quality of a transplant center, the Centers for Medicare and Medicaid (CMS) define a successful transplant as one in which the patient is alive with a functioning graft at 1 year. The United Network for Organ Sharing (UNOS) and the payers have adopted CMS metrics. Before the CMS final rule, I think transplant physicians and surgeons felt that “saving a patient’s life” by finding them a suitable allograft and getting them out of the hospital was success. We did liver transplants for patients who had a predicted one-year survival rate of < 70%. We took risks on organs and patients’ diseases that we would not consider doing now that our actions can put programs and hospitals at risk of decertification. We spend a lot of time adjusting the risk needle to satisfy CMS’s definition of success. We have all done the fireman’s carry of a patient with a failing allograft or a flickering life force across the one-year finish line. I think most of us could agree that this type of effort does not feel very satisfying and is not the success that we had hoped for.
What do your patients think? Until I started asking them this question a few months ago, I had no idea. I assumed they had the same definition as I did, being alive and free of the pain and perils of debilitating end stage organ disease. I knew quality of life measurements showed that the patients were better off than before the transplant, but for most patients things could hardly have gotten worse. I think we need to begin to explore this question beyond what can be discovered with quality of life indices. To do this we need a better understanding of the burden of disease and of transplantation. The restoration of health, happiness, and productivity should be the goal, but not just for one year. We need to get insurers and regulators more interested in outcomes that patients consider to be important. It is going to take resources and buy-in from all the stake holders.
And what about innovative therapy like desensitization or xenotransplantation? The more desperate patients feel, the more risk they are willing to take. What are the limits of risk? Based on primate studies, the best we can expect from xenograft survival in the early human trials will be about 1-2 years and much of that time could be spent in the hospital. Which groups of patients might consider a one- or two-year dialysis hiatus a meaningful outcome that they would be willing to put their lives on the line for? These are questions we need to find out.
I spoke to a woman the other day at a kidney event who donated to her 60-year-old father five years ago. I asked how he was doing. She smiled and said his creatinine was 1.0. I said, “That’s great. You must be very proud and happy.” She replied that she was, but that he shook so much that he could no longer take care of himself and she had had to move in with him. I asked if they had discussed this with his doctor. “Yes, but he said it was just a side effect of the medication and not Parkinson’s,” was her reply. “I don’t want to complain. I am just glad he is alive.”
With all the resources and knowledge I have at my disposal – my brightest colleagues ready to discuss my problem with me at meetings or on the phone and my ability to read and process key studies in the literature, travel to centers using innovative immunosuppression protocols, and weigh the risks of trying them – I have no doubt that I will be back in the operating room soon. Barring a lightning strike, I will return to the life I had hoped for. I am an exception and my story in no way mirrors most — in fact, it acts as an important contrast to the journey of many of our patients. This awareness compels me to ask them questions I never did before and the answers I get are pretty shocking. Everyone who has a stake in transplantation should want their patients to more fully actualize the potential of the miracles we enable. Being awestruck that these folks are still alive and walking around is no longer an acceptable metric for success. We can do better.
- Tzvetanov I, D'Amico G, Walczak D, Jeon H, Garcia-Roca R, Oberholzer J, Benedetti E.High rate of unemployment after kidney transplantation: analysis of the United network for organ sharing database.Transplant Proc. 2014 Jun;46(5):1290-4.