Amy Silverstein, NY Times 4/18/23: My Transplanted Heart and I Will Die Soon

A few excerpts:

My 35 years living with two different donor hearts (I was 25 at the time of the first transplant) — finishing law school, getting married, becoming a mother and writing two books — has felt like a quest to outlast a limited life expectancy. With compulsive compliance, I adhered to the strictest interpretation of transplant protocols. I honored my gifts of life with self-discipline: not one pat of butter; not one sip of alcohol; running mile after mile hoping to stave off vasculopathy, an insidious artery disease that often besets transplanted hearts within about 10 years...

But now I lower my chin and whisper the words malignant … metastatic … lungs … terminal. It is the end of the road for my heart and me…

Organ transplantation is mired in stagnant science and antiquated, imprecise medicine that fails patients and organ donors. And I understand the irony of an incredibly successful and fortunate two-time heart transplant recipient making this case, but my longevity also provides me with a unique vantage point...

Over the last almost four decades a toxic triad of immunosuppressive medicines — calcineurin inhibitors, antimetabolites, steroids — has remained essentially the same with limited exceptions. These transplant drugs… cause secondary diseases and dangerous conditions, including diabetes, uncontrollable high blood pressure, kidney damage and failure, serious infections and cancers...

Transplantation is no different from lifelong illnesses that need newer, safer, more effective medicines. Improvements in drug regimens are needed for lupus, Parkinson’s and a host of others. The key difference is that only in transplantation are patients expected to see their disease state as a “miracle.” …But this narrative discourages transplant recipients from talking freely about the real problems we face and the compromising and life-threatening side effects of the medicines we must take.

This “gratitude paradox,” as I’ve come to think of it, can manifest itself throughout the transplant professional communities as well. Without vigorous pushback, hospitals and physicians have been allowed to set an embarrassingly low bar for achievement.

My take: Though organ transplantation has extended lives, this touching first-hand account outlines important obstacles/challenges that transplant medicine continues to face. For pediatric providers, the article is even more sobering as good outcomes need to last even longer.

The response letter to this column are worth a read: Letters -Hard Truths About Organ Transplants Some excerpts:

From Roger Mills:The procedure is not a cure, but a trade. Patient and physician agree to manage a short-term life-threatening illness by substituting a long-term life-threatening illness — immunosuppression…I take issue only with her understandably harsh words about “stagnant science and antiquated, imprecise medicine that fails patients and organ donors.” Early on, many thought the immune response would yield to targeted therapies using relatively nontoxic small molecules. But experience has taught us that managing the immune response is like peeling back layers of an onion. There are more layers than we ever dreamed of, and each one brings more tears.

From Judith Hale: Here is another story: I’m a healthy, happy 74-year-old who received a heart transplant at the age of 56. I live a normal life: I walk at least two miles a day, cross-country ski in the winter, and tend my garden the rest of the year. I’m not on any special diet: I eat butter and drink an occasional glass of wine with dinner. I have virtually no side effects from the medications. I couldn’t be more grateful for the advances in medical science that have, so far, given me 18 healthy years of life.

From Ronald Kalen: In fact, the advances of transplant medicine have been remarkable given the complexity of the immune system. It is not a trivial problem for research. Dedicated scientists have spent careers in prolonging the life of the transplanted organ, as well as the life of the person receiving that organ, and are as aware as Ms. Silverstein of the “deeply entrenched problems” that remain. Their research is not “mired in stagnant science and antiquated, imprecise medicine that fails patients and organ donors.”

Related reference: M Tincopa. Liver Transplantation 2023; 29: 548-554. CAQ Corner: Long-term medical complications of liver transplantation

Related blog posts:

• Liver Transplant Outcomes in Children: Two Studies
• How to Lower Pediatric Liver Transplantation Waitlist Mortality