On April 18 of this year, the New York Times ran a beautifully written op-ed by the author, Amy Silverstein. I knew who Amy Silverstein was, because about 15 years ago, I read her amazing book, Sick Girl, which she published in 2007. Reading Sick Girl was life changing for me. At the time, we were living in Germany the first time, and I had ordered the hard copy of the book, because I didn’t own a Kindle. I’m not even sure if Kindles existed at that time. I think I decided to buy Silverstein’s book about her experiences as a heart transplant recipient after reading a review of Sick Girl in People. I love books about real life health crises… or, at least I used to love them when I was younger and the crises seemed less like something I might experience personally.
I read Sick Girl in 2008 and reviewed it for Epinions.com. I reposted my review here, combining it with another review I wrote about a book called Change of Heart, which was written by Claire Sylvia, another transplant recipient. The two books were very striking to me, as they had such different moods to them. Claire Sylvia’s book about being a double transplant recipient (heart and lung) was overwhelmingly positive and grateful. After she wrote her book, Claire Sylvia went on to also receive a kidney transplant. She died August 19, 2009, 21 years after her heart and lung transplant.
Amy Silverstein’s book, Sick Girl, by contrast, was a lot more negative and honest. Silverstein wrote a no holds barred account of what it actually means to be a transplant recipient. She received her first heart in 1988, when as a 25 year old law student, she had health problems that revealed a congenital heart defect. In Sick Girl, Silverstein explained that many people believe that organ transplants are miraculous cures for people whose organs fail. But really, organ transplants just trade one health problem for another, as recipients have to take medications that keep their immune systems from destroying the foreign organs. Amy Silverstein had a life expectancy of about ten years in 1988, after she accepted a heart belonging to a 13 year old girl who happened to die in an accident at just the right time to save Amy’s life.
In 2007, when Sick Girl was published, Amy had already defied her doctors’ expectations for her survival by an additional ten years. But even though she’d had 19 years, when she was expected to only have ten, and even though she’d become a wife and adopted her son, Casey, Amy had seriously contemplated suicide. She was tired of being a “sick girl”. In 2005, when Amy was thinking about taking her own life, she was fixated on how difficult the regime was, and how she didn’t want to live that way anymore.
When I read Amy’s book, written a couple of years after she had those suicidal feelings, I empathized. I could totally understand why she was so tired of being sick and tired all the time. She had to submit to a grueling regime that included procedures like heart biopsies, and taking medications that made her throw up and put her at risk for every virus in the atmosphere. A simple cold could leave her bedridden for weeks. And people didn’t understand what it was like for her and made clueless comments that were infuriating in their innocence… and ignorance. So she wrote her book to educate the masses.
Not everyone liked Sick Girl. A lot of people thought Amy Silverstein was ungrateful and unpleasant. Some people found her whiny and self-absorbed. Quite a few folks seem to believe that anyone who gets an organ transplant should shut up and be eternally grateful, even if they are constantly sick and having to see doctors for painful, invasive, and expensive treatments and screenings. I, for one, heartily disagree, because if no one ever complained about the experience of having transplanted organs, scientists and doctors would never know what to improve about the experience for future patients. Moreover, I don’t think that just because someone gets a new lease on life, they should be expected to just shut up and act happy. I also don’t believe Amy Silverstein was ungrateful.
Amy’s first heart lasted an astonishing 24 years, before it started to fail due to the ravages of her immune system, antibodies that her body developed to attack the heart, and the many powerful anti-rejection drugs she had to take to stay alive. She needed another heart transplant, but having undergone one already and knowing what receiving a second heart would mean for her, Amy Silverstein hesitated. But then she got by with a little help from her friends.
In 2017, Amy Silverstein wrote another book, titled My Glory Was I Had Such Friends: A Memoir. I downloaded the book in September 2020, but never got around to reading it until this month. I read it after reading Amy Silverstein’s obituary in The New York Times, which appeared just a few weeks after her lovely essay, titled “My Transplanted Heart and I Will Die Soon”, appeared in mid April. In the essay, Silverstein wrote that she had taken excellent care of her second heart, which she received in 2012. However, because of the drugs she had taken since 1988, Amy developed several types of cancer. From the op-ed:
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. Standing on the edge of death now, I feel compelled to use my experience in the transplant trenches to illuminate and challenge the status quo.
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 (which must be taken once or twice daily for life, since rejection is an ongoing risk and the immune system will always regard a donor organ as a foreign invader) cause secondary diseases and dangerous conditions, including diabetes, uncontrollable high blood pressure, kidney damage and failure, serious infections and cancers. The negative impact on recipients is not offset by effectiveness: the current transplant medicine regimen does not work well over time to protect donor organs from immune attack and destruction.
After I read the New York Times op-ed in April, I remembered that I had downloaded Amy Silverstein’s second book about her second heart transplant, and how her friends had helped her (and her husband, Scott) through the experience. I made a mental note to read that book, but didn’t get to it until I read Amy’s obituary, which ran in the New York Times on May 16, 2023. Amy died on May 5, 2023. Two weeks after reading about her death, I’ve finished reading My Glory Was I Had Such Friends. Once again, I’m left very moved and better educated about organ transplants than I was before I read the book.
Although Amy’s op-ed indicates that transplant science hasn’t changed a lot since the late 80s, when she received her first heart, her second book indicates that things have actually changed somewhat. Because of her unusual circumstances, and the fact that she’d had her first heart for so long, Amy Silverstein was advised to go to Cedars-Sinai Medical Center in Los Angeles, California, which has the most advanced transplant program in the United States. Amy’s first heart transplant was done in New York, and she’d spent the ensuing decades seeing doctors in New York. But even though they knew her better than anyone else, her doctors told her she should be treated by Dr. Jon Kobashigawa, a renowned transplant surgeon there. So that’s what Amy did. She packed and went cross country for treatment in Los Angeles. But she needed help, and that’s where her posse of friends came into the picture. They all had their own unique strengths that helped Amy survive in her hour of need.
Amy Silverstein was blessed with several female friends who loved her dearly. And those friends picked up their lives to be with Amy and her husband, Scott, as they waited for a new heart to become available to her. It was a very difficult time, and in the brutally honest and somewhat negative style of her first book, Silverstein explains how difficult it was… and how much a lot of it really sucked. Again, I could hardly blame her. Some of what she endured sounded absolutely horrifying. Also, as Amy got older, she became much less interested in indulging the egos of some of the people who treated her. I found her stories of what she endured both fascinating and dreadful… and again, I could hardly blame her for complaining. Meanwhile, she had these devoted friends who were there for her, in spite of Amy’s apparently difficult and demanding personality. There must have been good reasons for them to love her as much as they obviously did.
When I read the reviews on Amazon.com, I wasn’t surprised to see that, once again, some readers found Amy Silverstein abrasive and ungrateful. And, once again, I think they missed the point and probably didn’t think very long and hard about what Amy was enduring. As the negative reviewers complained about Amy Silverstein’s apparent lack of gratitude, they failed to have any empathy for her situation. It’s easy to think that if you or I were in such a grave situation, we wouldn’t be perfect patients, endlessly patient, sweet, compliant, and never once failing to constantly thank everyone profusely. But the reality is, if you are, yourself, in that situation, cooped up in a hospital room, unable to breathe or sleep, using a pacemaker that constantly sends painful shocks into your body because your heart is so diseased, and not even able to enjoy sunlight or fresh air, your attitude might suck, too. You might become demanding and unpleasant. Moreover, I don’t think Amy Silverstein was, at all, ungrateful.
If Amy Silverstein had really been an ungrateful patient, she never would have lived for as long as she did. Amy Silverstein respected both of her donors by taking excellent care of both hearts. An ungrateful person would not have done that. They would have simply given up, stopped taking their medications with the unpleasant side effects, quit seeing their doctors, and just up and died. Amy’s second donor was also a thirteen year old girl, who had been an athlete. After she received her second heart, Amy recovered within weeks. She went running, because she felt well… In fact, she felt better than she had since before her first transplant. Of course she was grateful! And she got another ten years to enjoy that heart before she died… not because the heart failed, but because of the drugs she had to take to keep it beating. I would imagine that the COVID-19 pandemic was especially hard for Amy, who was regularly wearing face masks years ago, because she was a transplant patient.
When I read My Glory Was I Had Such Friends, I could relate to Amy Silverstein’s story, and I knew she wasn’t blowing any smoke up my ass about what it’s like to be a transplant recipient. Yes, it’s important to be grateful, but as I mentioned up post, if no one ever complains, then improvements can’t be made. No one would ever see the need for improvements. That makes it harder for the patients of the future. Moreover, sometimes people should be told the brutally honest truth, so they can have a more realistic perspective. Yes, organ transplants are kind of miraculous, but they aren’t a cure. Amy Silverstein helped me realize how fine the line is between life and death for transplant patients. She would have turned 60 on June 3rd of this year, and she managed to accomplish so much in her lifetime. No one expected her to live beyond age 35, yet here we are. Maybe the reason she did live for so long is because she was so very “difficult” and “demanding”. Not complaining might have meant giving in… and giving up.
Anyway, I really enjoyed both of Amy Silverstein’s books, and I am grateful that she shared her experiences so candidly. I agree that sometimes she was negative, and I’m sure some staff at the hospitals she attended thought of her as a pain in the ass. But, I found Amy’s accounts of her experiences authentic, realistic, and important, and she was a very expressive writer.
I’m glad Amy didn’t simply shut up and stop whining. Those who found Amy insufferable can now take comfort that she won’t ever bother anyone again with her “negativity”, but she no doubt taught countless healthcare professionals through her remarkable case and astonishing longevity. Anyone who regularly reads my blog probably knows that I’m big on being real and occasionally “inappropriate”, warts and all. For me, Amy Silverstein’s books check all the boxes. I highly recommend them both.
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