Opinion | The Harsh Truth About Organ Transplants: The Often Dire Aftermath

To the editor:

“Re”My Donner Heart and I Will Die Soon,” Amy Silverstein (Opinion Guest Essay, April 23):

Even in her last hours, days and months, Amy has been very brave.As a fellow heart transplant recipient of 21 years, I affirm that everything she says about being a patient is true. can.

Being negative is an abomination to my personality, simply because I don’t have the courage to consider my transplant to be anything but a miracle. People assume it must be easy because you can handle it well. it’s not.

Amy’s positivity was in sticking to patient protocols to give her heart every chance to perform well. But the system needs change. A transplant is a treatment, not a cure.

Before she leaves, I want to thank her for telling the truth and working hard to make the world of transplants a better place for those of us who struggle every day to survive.

Godspeed, Amy.

Candace Moose
ramson, new jersey
The author is co-founder of the Myocarditis Foundation.

To the editor:

Amy Silverstein’s inspiring guest essay stirred up many memories. From 1990 to 1996 he was the medical director of heart transplantation at the University of Florida, and it was an emotional rollercoaster ride her six years.

Silverstein’s essay sharply captures the heart transplant dilemma. This procedure is a deal, not a cure. Patients and physicians agree to manage short-term, life-threatening illness by substituting immunosuppression for long-term, life-threatening illness.

I only object to her understandably harsh words about “stagnant science and outdated and inaccurate medicine that fails patients and organ donors.” Early on, many believed that the immune response would lead to targeted therapies using relatively less toxic small molecules. But experience has shown that managing an immune response is like peeling the layers off an onion. .

Mr. Silverstein’s voice greatly enriched the dialogue between patients and physicians. All we can say is “Goodbye and thank you for calling out”.

Roger M. Mills
Chagrin Falls, Ohio

To the editor:

I want Amy to know that I was thinking of her and brought her my My heart since we met in 2017. Her husband and I were doing a back road trip in the Dolomites of Northern Italy. Each day we did her 8-10 mile hike, often with a lot of elevation gain.

During the first few days, I was lucky enough to hike with Amy and learn about her two heart transplants, her books, and her very disciplined lifestyle. Not only was she inspiring, she was hard to keep up with even on the steepest climbs.

I returned from Italy and bought and read her book My Glory Was I Had That Friends. Amy has cherished her twice blessed life. I can’t imagine anyone hosting Heart with more compassion and gratitude. In the process, she touched as many people as I did and came to appreciate every breath we took, every step we took.

My hope is that researchers will heed her pleas and strive to reach new heights for transplant patients.

Susan Hauser
Winston Salem, North Carolina

To the editor:

Who doesn’t love the heartbreaking story of a dying transplant patient defying the medical system that saved his life? or affect the willingness of potential recipients to accept them.

Here’s another story: I’m a healthy, happy 74 year old who had a heart transplant at 56. I lead a normal life: I walk at least two miles a day and cross-country ski in the winter. , and take care of my garden for the rest of the year. I’m not on a special diet. I eat butter and occasionally drink wine with dinner. Side effects from drugs are rare.

So far, I cannot be more grateful for the advances in medicine that have given me eighteen years of good health.

Judith Hale
Tigard, me.

To the editor:

I was clueless. The image in my mind of having a transplant is one in a series of harrowing procedures, but once the hurdles are overcome, the selfless act of a competent doctor and donor will work miracles, leading to a long and healthy life. A life awaits.

Amy Silverstein’s guest essay reveals the horrifying truth of living with terrible side effects and that instead of death from a malfunctioning organ, immunosuppressants bring death. I’m really sad. My body ached when I read about this systemic failure to support progress in immunosuppressive therapy.

Mr. Silverstein is a great communicator. Losing Mr. Silverstein is a loss for all of us.

Robert A. Harris
wayland, massachusetts

To the editor:

My husband passed away in 2013, 20 years after having a liver transplant. He had shingles, cancer, broken bones, internal bleeding, etc. I believe his body finally ran out of power after 20 years of taking immunosuppressants.

Like Amy Silverstein, we were grateful for the years the transplant gave Jim. After being a cyclist for many years, he was able to ride a bike again. However, he was ill for months, interspersed with periods when he was able to work, travel and spend time with friends.

It’s hard to complain when given life as a result of a major organ transplant or someone else’s death. predisposed to serious life-threatening conditions.

The U.S. medical system has succeeded in giving Jim many years of life, but there is much he can do to make that life less painful, less disease-ridden, and more productive. I made it.

Marilyn O’Leary
albuquerque
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 death for the third and sadly the last time. But her opinion implies that transplant medicine is not enough to prevent rejection of her second heart and the development of cancer.

Indeed, given the complexity of the immune system, advances in transplant medicine have been remarkable. It’s not a trivial matter for research. Dedicated scientists have spent their careers extending not only the life of transplanted organs, but of those who receive them, and like Silverstein, the remaining “deeply ingrained I am aware of the problem.

Their research is not “buried in stagnant science or outdated and inaccurate medicine that fails patients and organ donors.”

Ronald Cullen
Highland Park, Illinois.

To the editor:

I can understand Amy Silverstein’s frustration about immunosuppressive drug therapy, but her criticism of the transplant system and the drugs that keep it going is that the drugs she soon demonizes kill tens of thousands of transplant patients. remains alive and healthy.

I got a kidney from my father 23 years ago. Since then, I have been religiously taking pills twice a day to soothe my immune system. .

Without these drugs, the author would not have lived 35 years on a donor heart and I would have died on a dialysis machine long ago. I am grateful every day for the drug protocol that has given so much to so many people.

John F. Martin
Gross Point Park, Michigan.

To the editor:

Amy Silverstein’s essay was true to me. My wonderful brother with type 1 diabetes received a kidney from his wife. His happy year without dialysis was filled with family, travel, and love, but weight loss, fatigue, and pain brought him back to the hospital.

A devastating diagnosis of advanced liver cancer sent him to hospice, where he apologized to his wife for leaving him with a lonely kidney, possibly shortening her life as well. It reassured him that his precious year was worth living with the pain of surgery, a single kidney and all the harmful drugs.

My brother, his wife, and their excellent and dedicated doctors all enjoyed the “victory” and gratitude Mr. Silverstein described.

Silverstein’s pleas for more transplant research, better immunosuppressive therapy, and rapid new advances in transplant medicine are timely and necessary.

Mary Lake Pollan
New Haven, Connecticut
The authors are professors of clinical obstetrics and gynecology at Yale University School of Medicine.