When Amy Silverstein told her doctor she was having fainting spells, he dismissed it as nerves. It was only after months of vomiting blood that it became clear she needed a heart transplant. Immediately. At age 25, she was given 10 years to live. Now, at 44, she has written Sick Girl, her memoir of doctors, hospitals, her husband's coping strategies, and a near-death experience.
MC: Ignoring a pounding heart and a few fainting spells is one thing, but I have to say that if I were throwing up blood ...
Silverstein: [Laughs] Well, that's what you say, but you have to look at the context. I was in my 20s. I'd never known anyone who was ill. I had one of the finest internists in New York, who told me early on that I had low blood pressure and was stressed. I know it seems odd, but there's a part of you that wants to believe you're okay. Besides, I was in law school — and what first-year law student doesn't have a pounding heart? We want to believe in our doctors' making little of our symptoms. It comes as a relief to hear that you're a nervous hypochondriac.
MC: You ended up having a heart transplant.
Silverstein: About a year after the serious symptoms started, I had congestive heart failure, which means the muscle wasn't working properly. Tests revealed I'd had a virus in my heart, but the doctors thought I should be better in six months. But six months later, my heart started to have lethal arrhythmias that I'd have to be brought back from. At first, doctors thought they could control them with medicine. But when they gave me a test to find the right prescription, they lost me on the table. The doctor said that there were no options; I needed a transplant. I was first on the recipient list but waited in the hospital about eight weeks to get the transplant.
MC: It's not easy to live with a transplanted heart, yet your book is really the first time your friends and family had a glimpse of how hard it is.
Silverstein: Yeah. People don't recognize that it's hard because I'm not toting around an oxygen tank, and I appear to be fine. I kind of live a disguised life. When I get up from the table after a long dinner with friends, they just walk to the door. I'm walking, and my heart is saying, "What are you doing?" Most people take for granted that when you stand, your heart speeds up immediately. Mine doesn't, and I get a feeling of "wrong" in my body every time.
MC: How else has your body changed because of the transplant?
Silverstein: I was only 25, and it took away my looks. I look at my wedding pictures, and I have a big, fat moon face and hair on my back from the steroids and things that any normal woman — especially at that age — would recoil from. Having a transplant isn't pretty. I have warts from the medicines. My husband, Scott, tells me I'm beautiful, but I look at my friends, and I know I have real abnormalities. You'd think that the normal-woman thing that says, "She's skinnier than I am," would dissipate after all I've been through and that I'd have bigger things to worry about. But that natural-woman part of me is still there.
MC: How's your health now?
Silverstein: It's still a daily struggle of feeling quite ill from my medicine and my more-than-periodic infections. I take a whole lot of antibiotics, but I just had my annual exam in June and everything was fine with my heart. At this point, when I ask how I'm doing, my doctor tells me, "Well, we're in uncharted waters, but I'm happy to navigate them with you."
MC: What's it like to face your mortality every day?
Silverstein: It's not like I pour my orange juice and say, "I could die tomorrow." But if I'm in the middle of a jog and my heart does something weird or I get a fever, it is in the back of my mind that this could be it. I did have a near-death experience before my heart transplant, where I flatlined and just entered blackness. There was no "white light." So I am convinced that death is nothingness. When it ends, it is just blackness, like going to sleep. It's not like it's going to be a lonely, terrible place; it's just that your consciousness is gone. Everyone wants a glimmer of hope that, well, maybe I become a flower or maybe I can float around and watch life below me. But I know that's not there. It makes the thought of death very sad to me, but I also understand that there's not going to be a me after this, so you've got to kind of enjoy it now. Still, I try not to dwell on it.
MC: What do you hope women learn from your experience?
Silverstein: First, people should realize that doctors are just people who went to a specific trade school. You have to remember that they're human beings and not hold them up as these deities who have all the answers or are always right. You also need to trust your intuition. I knew something was wrong. I didn't want to focus on it, but I knew. If you feel that and a doctor is telling you otherwise, you need to have the wherewithal to say, "Thank you very much," and go elsewhere.