Amy Silverstein has endured two heart transplants, one at 25 and the other at 50. When she suddenly had to move across the country for the second surgery, her closest friends organized an effort to make sure she’d never have to spend a night alone. Silverstein chronicles their determination to lift her spirits in her new book, “My Glory Was I Had Such Friends.” She shared her story with TODAY.
I’m the luckiest woman alive. Organ donation saved my life. A 13-year-old girl, her family and their incredible humanity saved my life.
But what got me to that moment were my friends and my husband. He’s magnificent, but without my friends, I would have spiraled into a terrible depression. I would have given up. They held me up. I could not have done it without them.
My first health problems began at 24. I was a student at NYU Law School when I noticed I couldn’t keep up with my friends when we were walking to class. I gained weight, especially in my ankles and feet. I couldn’t get my shoes on, which is a sign of heart failure.
My doctors didn’t find out until I had a transplant that I had a congenital defect called arrhythmogenic right ventricular dysplasia (ARVD), which can be silent.
The first heart transplant took place in 1988. The donor was a 13-year-old girl who had died in a car accident. Doctors told me the heart would last 10 years at best.
I didn’t even think that I could get another heart transplant after that. That’s why it’s amazing that my then-boyfriend Scott proposed to me knowing that he was going to be a widower by the time he was 35.
I was determined to do everything absolutely right. Not one pat of butter, not one sip of alcohol. Running miles no matter how sick I felt, taking every medicine, every day. I think it made a difference.
That heart lasted almost 26 years. But I wasn’t well, it was constantly grabbing for survival.
When a transplanted heart fails later on, it’s due to an artery disease called vasculopathy. It’s a form of rejection and it’s untreatable, deadly and very fast moving. I felt out of breath during normal activities, my ankles would swell and I had pain down my arms.
In November 2013, about two months before I realized I needed a new heart, I was treated for breast cancer and chose to have a double mastectomy. Developing cancer is a risk for transplant recipients. We keep our immune system down so that it doesn’t attack our donor heart. You take these immunosuppressants and they bring on cancer. You also have a lot of invasive exams. I’ve had 93 heart biopsies and 32 angiograms. They’re all done under fluoroscopy, which is 10 minutes of concentrated X-ray. It’s a cancer waiting to happen.
I live in New York, but for the second heart transplant, my doctor told me the only place where I had a shot at a successful surgery was Cedars-Sinai Medical Center in California. In early 2014, my husband and I went out there and I waited two months in the hospital for a donor heart to become available.
My girlfriends were just going to totally be there and make a difference. My friend Jill, who loves spreadsheets, made a spreadsheet. The goal was so that I would never have to sleep a night alone in the hospital and to help my husband so that he wouldn’t fall apart. Nine of my friends signed on even though it was hard for them, with their own families and obligations. But they made it happen. It’s amazing what you can do when you have to or really want to.
My situation was extremely dire. By the time the heart came through, I couldn’t walk ten steps. I had gained 17 pounds of water weight because my heart couldn’t pump my blood around. When my friends left to go home, they really didn’t think they would see me again.
The second heart transplant took place in May 2014. The donor was another 13-year-old girl who died in an accident.
I can feel that she was athletic — I feel her to be much more powerful than the first heart. I feel so much better after this second transplant than after my first. It’s unbelievable.
My doctor tells me he can’t predict how long I’ll go with this heart. That being said, I’ve had a transplant-related cancer, I’m still taking immunosuppressant medicines, I still have invasive exams under fluoroscopy — it’s not a good situation. So I dive into every day and I take care of this heart with the same obsessive quality that I did my first one.
I’m just doing as best I can for as long as I can. But while I’m here, it sure is great.