Opinion | Hard Truths About Organ Transplants: The Often Harrowing Aftermath

To the Editor:

Re “My Donor Heart and I Will Die Soon,” by Amy Silverstein (Opinion guest essay, April 23):

Even in her final hours, days or months, Amy remains very brave. As a fellow heart transplant recipient of 21 years, I can attest that everything she says about being a patient is true.

It is anathema to my personality to be negative, simply because I’m not brave enough to allow myself to think my transplant is anything other than a miracle. However, the cost is that only those closest to you know the truth of just how hard it is to live this way. People make the assumption that it must be easy because you handle it well. It isn’t.

Amy’s positivity lay in her strict adherence to patient protocols to give her heart every chance to perform well. But the system does need change. Transplant is a treatment, not a cure.

Before she leaves, I want to thank her for telling the truth and for trying to make the transplant world better for those of us still fighting every day to live.

Godspeed, Amy.

Candace Moose
Rumson, N.J.
The writer is co-founder of the Myocarditis Foundation.

To the Editor:

Amy Silverstein’s moving guest essay stirred many memories. From 1990 to 1996, I served as the medical director for cardiac transplantation at the University of Florida, a six-year ride on an emotional roller coaster.

Ms. Silverstein’s essay poignantly captures the dilemma of heart transplantation. 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.

Ms. Silverstein’s voice has profoundly enriched the dialogue between patients and physicians. All we can say is “farewell, and thank you for speaking out.”

Roger M. Mills
Chagrin Falls, Ohio

To the Editor:

I would like Amy to know that I am thinking of her and have carried her in my heart since we met in 2017. My husband and I were on a Backroads trip in the Dolomites of Northern Italy. Each day we hiked eight to 10 miles, often with considerable elevation gain.

In the first few days I was lucky enough to hike with Amy and learn the story of her two heart transplants, her books and her very disciplined lifestyle. She was not only inspiring, but also hard to keep up with, even on the steepest climbs.

I returned from Italy and purchased and read her book “My Glory Was I Had Such Friends.” Amy has cherished her twice-blessed life. I cannot imagine anyone who has hosted a heart with more care and appreciation. Along the way she has touched so many, like me, and made us more appreciative of every breath we take, every step we make.

My hope is that researchers will hear her pleas and work to scale new heights for transplant patients.

Susan Hauser
Winston-Salem, N.C.

To the Editor:

Who doesn’t love a heart-wrenching story of a dying transplant patient railing against the health care system that saved her life? I fear that this one-sided, biased story about heart transplants will affect the willingness of other people or families to donate organs or potential recipients to accept them.

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.

Judith Hale
Tigard, Ore.

To the Editor:

I was clueless. My mental image of undergoing a transplant is one of a harrowing set of procedures, but once the hurdles are overcome, a long and healthy life awaits, a miracle delivered by competent physicians and the selfless act of the donor.

Amy Silverstein’s guest essay peels back the awful truth of living with the awful side effects and the substitution of death by immunosuppressive drugs for death from a failing organ. Truly sad. My body ached as I read about this systemic failure to support progress on immunosuppressive therapies.

Ms. Silverstein is a brilliant communicator. The loss of Ms. Silverstein will be a loss for us all.

Robert A. Harris
Wayland, Mass.

To the Editor:

My husband died in 2013, 20 years after receiving a liver transplant. I believe that his body finally gave out after battling shingles, cancer, broken bones, internal bleeding and other consequences of taking immunosuppressive drugs for 20 years.

Like Amy Silverstein, we were grateful for the years that the transplant gave Jim. He was able to meet and get to know his only grandson. He was able to ride a bicycle again after being a longtime cyclist. But he had many months of illness interspersed with his periods of being able to work, travel and be with friends.

It is difficult to complain when you have been given a life due to a major organ transplant and as a result of someone else’s death. But the drugs that he took over the years actually wore his body out, and made him susceptible to many serious life-challenging conditions.

The U.S. medical establishment did well in giving Jim many years of life, but it could do better in making that life less painful, less illness-filled and more productive.

Marilyn O’Leary
The writer is the author of “How to Be a Widow.”

To the Editor:

As a nephrologist I can understand Amy Silverstein’s frustration as she confronts mortality for the third and, sadly, the last time. However, implicit in her opinion is that transplant medicine has not done enough to prevent the rejection of her second heart or the occurrence of her cancer.

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.”

Ronald Kallen
Highland Park, Ill.

To the Editor:

I understand Amy Silverstein’s qualms about immunosuppressive drug therapy, but her diatribe against the transplant system and the drugs that sustain it fail to take into account the tens of thousands of transplant patients being kept alive and well by the medicine she’s so quick to demonize.

I received a kidney from my father 23 years ago. I have religiously taken the medications to temper my immune system twice daily since. They have given me a life in which I’ve built a business, had a family and lived every day to its fullest.

Without these meds, the author would not have had 35 years with donor hearts, and I’d have probably died on a dialysis machine long ago. My wife, my children and I give thanks every day to the transplant system and its drug protocols for giving me and so many others so much.

John F. Martin
Grosse Pointe Park, Mich.

To the Editor:

Amy Silverstein’s essay rang true to me. My wonderful Type 1 diabetic brother received a kidney from his wife. Their joyful, dialysis-free year was filled with family, travel and love — until the weight loss, exhaustion and pain brought him back to the hospital.

The devastating diagnosis of advanced liver cancer sent him to hospice, where he apologized to his wife for leaving her with a lone kidney, possibly shortening her life, too. She reassured him that their last precious year was worth the surgical pain, her life with a sole kidney and all the noxious medications.

My brother, his wife and their excellent, committed physicians all enjoyed the “victory” and gratitude that Ms. Silverstein described. They also endured the horror of goodbye.

Ms. Silverstein’s plea for more transplant research, better immune suppression therapies and new, rapid advances in transplant medicine is timely and necessary.

Mary Lake Polan
New Haven, Conn.
The writer is a professor of clinical obstetrics and gynecology at the Yale School of Medicine.

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