Heart to heart
Lee Cowan has had a remarkable heart-to-heart talk with a woman who can tell us a LOT about hearts, all of it learned through the most trying of experiences:
"My transplanted heart was coming to its abrupt end. It was not a case of, 'Let's try this medicine,' or 'Let's watch and wait.' No, it was over."
When Amy Silverstein sat down to write about her life, death was probably a little indignant. After all, Amy cheated death not once, but twice.
At the heart of Silverstein's story are her hearts -- yes, hearts. Silverstein has had three hearts so far, starting with the one she was born with. That one failed when she was just 24 years old, while she was out on a date.
"We were at dinner and all of a sudden, my heart started beating erratically," she recalled.
What did it feel like? "Just a pulsing that was very powerful -- boom boom boom, fast. I just remember saying, 'Don't let me die, don't let me die.'"
Turns out a virus had damaged her given heart beyond repair. Her only option was a transplant.
She was eventually matched with a heart from a 13-year-old donor, but living as a transplant patient wasn't the turnaround some might expect. The medication she was taking daily to keep her body from rejecting her new heart was nasty stuff -- with even nastier side effects.
Amy and Scott, the man she was out with on that fateful date, married a year to the day after she got the transplant. "I've spent most of my adult life trying to keep Amy alive," Scott said.
He had no illusions their life together would be easy, and it wasn't.
"We've had an incredible love affair for 25 years," Scott said, "but day-to-day, it was filled with a lot of sickness, a lot of crisis, a lot of nights in the emergency room."
Her closest friends saw just how hard living really was -- not that Amy wasn't grateful. "We don't live inside of her body," said Lauren Stern. "And as close as we are, we don't know what it takes for her to get up and live every day, and be in discomfort and feel nauseous and sick."
"I fought to keep this heart going with every pill, with every heart biopsy, with every run I would take," Amy said.
"You took really good care of it," said Cowan.
"Such good care, such honoring of this gift that I had, but you know, when you're 25 years old and you feel so ill, it's just for me impossible to have gratitude just carry you along with a smile. I believe that you can be grateful and angry, grateful and sad, grateful and lonely."
That sentiment made it into a book she penned back in 2007 called "Sick Girl" (Grove). In it, she detailed that while she had lived her life -- even adopting a son -- there were times she didn't feel much like living.
It was frank, it was honest, and it was criticized.
"I did get some really cruel responses. Cruel," she said. "I mean, one person wrote something to the effect of, 'The doctors should have let you die.' Really?"
Her transplanted heart gave it everything it had -- surpassing doctors' expectations by beating for an astonishing 25 years -- more than double its predicted lifespan.
But the day finally came when it, too, began to fail, forcing Amy to make a decision: get in line and hope for yet another transplant, or let her dying heart take her with it.
"I had lived to 50 years," Silverstein said, "I had seen my son grow, gotten him off to college. I had written a book, I had graduated law school, I had married Scott, and we had wonderful years together. Maybe it was time, you know?"
Scott didn't fault her reservations; neither did her friends.
"But despite all that, I'm sure you still wanted to urge her in the direction of fighting as hard as she could?" asked Cowan.
"Oh, urge would be an understatement," her friends replied. "Extort!"
Stern, Robin Abrams and Jill Dresner helped form what can only be described as a support group posse.
Silverstein's best chance at getting a second heart transplant -- a rarity by anyone's measure -- was to leave her home in suburban New York and travel to Cedars Sinai Medical Center in Los Angeles. Nine of her closest friends promised that if she did that, they would fly out with her, to keep watch over her, and her husband, every step of the way.
That promise though sounds easier than it was; Silverstein's best chance at a transplant was to leave her home in New York and move to Cedars Sinai Heart Institute in Los Angeles -- which meant her friends would essentially have to move with her.
And nobody knew for how long.
Dresner (who "loves a good spreadsheet") coordinated with her friends, who made sure Silverstein spent not a single night by herself. Had it not been for that support available to her, Silverstein told Cowan, "I think I wouldn't have gone through with it."
Her friends came and went in four-day shifts, often arriving jet-lagged from the airport with bags full of decorations to give Silverstein something to look at. They took for her walks; they did her hair. But the best comfort was simply their company.
"Time was so precious, right? It's life in high relief," said Robin Abrams. "I don't know how you're going to feel tomorrow, you might not sleep tonight, let's just take advantage of the time."
"It felt like a very special and separate kind of womb, if you will, like a cocoon almost," said Dresner. "Very intense."
Scott said of their effort, "How do you put a number on that? How do you measure it? It was just so critically important."
Almost three months into that devoted vigil, Silverstein's doctor finally appeared in her doorway with some rare good news. "He said in that lovely, soft, humble voice of his, 'We've got a donor for you,'" she said. "And he said that it was a 13-year-old girl. And I started to cry."
Incredibly, the heart of another 13-year-old donor would give Silverstein another shot at life.
Cowan asked, "How close to dying were you, do you think?"
"I don't know if it was days, maybe a week. Very, very close."
She and Scott sat on her bed pondering what was about to happen, again; then, it was off to surgery.
It was three years after that day that Cowan accompanied Silverstein back to Cedars Sinai for a routine checkup.
Her doctor's verdict: "Fabulous. Not one missed beat, I don't hear any extra sounds. I could not be more pleased!"
In the years since her first transplant, medical science has come a long way. Her new heart is a better match, the drugs are more targeted, the recovery time less.
In fact, she was back to working out within weeks. On most days she even beats Scott on a run.
But with every foot hitting the pavement, comes the same thought: "I'm a mother to this heart, and I feel her," she said. "She was very much an athlete; I can feel that in this heart. And sometimes I even push out my chest a little bit when I'm running, and let her run. I know that's kind of weird, right? But I feel her and I feel that I'm carrying around a daughter this time."
There was a party at Silverstein's house this past week to celebrate her second book, fittingly titled, "My Glory Was I Had Such Friends" (HarperCollins). In short, it's about the power of showing up for those you love, no matter the odds, no matter the distance.
"These are icing-on-the-cake days," she said. "So I'm just so fortunate to be alive. I can't believe I made it."
For more info:
- "My Glory Was I Had Such Friends: A Memoir" by Amy Silverstein (HarperCollins); Also available in eBook and Unabridged Digital Audio Download formats
- Read a sample
- amysilverstein.com
- "Sick Girl" by Amy Silverstein (Grove)
