You have lived 20 years since receiving a heart transplant at age 24—as you say, a "crazy kind of amazing" medical miracle. What made this the right time for you to write SICK GIRL? AS: In my 17th post-transplant year, I experienced a pivotal event—a terrible brush with a threat of post-transplant lymphoma. Faced with the possibility of living as a heart transplant patient and a cancer patient, I simply broke apart. Even after I found out that the lump removed from under my arm was benign, I was unable to bounce back to my usual can-do will-do self. Reeling from post-surgery complications, I was also disappointed in my doctor. It was one of the worst times in my life as a transplant patient, but something wonderful came out of it. Seeing that I was unraveled by years of illness and then a lymphoma scare, my doctor grabbed for straws, anything that could make my life more livable. We talked for the first time ever about things like meaning in life, and he came up with an idea that would launch me into writing my first book. So, as is true for other self-discoveries and new beginnings, I had to hit rock bottom to get myself to where I wanted to be. And now I am a published writer on her way to a second book. Amazing. Remembering yourself as a high-achieving 24-year-old, how was it possible for you initially to overlook your symptoms of shortness of breath, temporary blindness, and blackouts? AS: I did not overlook them. No, they tugged at me every day, and I did pay attention, I just failed to interpret them in the right way. I was young, had been perfectly healthy and didn't know anyone, friends or family, who had ever been ill. I had no tools with which to construe my symptoms, and my family doctor had told me I was just a nervous law student with low blood pressure. Why would I doubt a smart, top-notch New York City physician with a great smile and an impressive white coat? Serious illness just wasn't a possibility that was going to occur to me. What about gratitude? You are, after all, alive and would have died without the transplant. And yet there is still anger, sadness, and struggle. Shouldn't gratitude carry the day? AS: I am tremendously grateful for being alive, for this wonderful donor organ, and for the support of my doctors, family, and friends all these post-transplant years. My goodness, I am so fortunate for having been saved by transplant and for surviving it for so long. But what I am not grateful for is having had my health taken away from me when I was just 24 years old, and for living every day since then with transplant-related illnesses and struggles that challenge me at every turn. Nor am I thankful that I live every day with the threat of imminent death by my side. Still, I do feel so much gratitude. There is nothing more spectacular than opening my eyes into a new day—even if that day is a difficult and sick one. Beyond my personal medical story, I would think that most any person who lives with day to day suffering and illness lives with a combination of gratitude and struggle. To have a difficult time abiding endless illness does not erase gratitude. In fact, someone who perseveres in spite of illness, and who goes on day after day facing each medical challenge in the best way he or she can—that is a person who is grateful for life. But being grateful does not mean the daily battle is easy or that you are happy about it, or even okay with it. You discuss the price you paid for "dumbing" yourself down. What five things would you tell a best friend about becoming a smart, savvy patient? AS: More important than the price I paid were the lessons I learned: Remember that doctors put their pants on one leg at a time. They might like or dislike you, and it can affect your care (doctors are not immune to snap judgments made on the basis of superficial things). They might be flat out wrong, so don't be afraid to trust your judgment and go for a second or third opinion. Keep your own records. Take notes while your doctor talks. This is not meant to be confrontational; it shows that you are paying close attention, and you take your doctor and your care seriously. It is also a valuable record. If I feel something odd or new, I can look back and see if this is something I have had before, what my doctor might have said about it, and whether it went away without incident. Keep yourself honest and smart about your own body! If you have a bad feeling about your doctor, any bad feeling, move on. Unless your insurance plan or a unique medical condition allows you only one option, never feel bad saying, "So long!" and asking for your medical records to go. Doctors are people; you are allowed to dislike them. Tell your doctor everything, even things that you think have nothing to do with your illness. When I was vomiting blood, I thought it was a stomach problem, when in fact it was the result of a failing heart that had caused other organs to fail. Scan your body in your mind; think about all the places that hurt, the bumps and lumps, the bloating, the changes. Do you feel "like yourself" or not? It's okay to say, "This might have nothing to do with my sore neck, but I have been having headaches at night..." Trust your instincts. You know your own body best. Your doctor's care will only be as valuable as the information you provide (all of it). You are true and equal partners with your doctor. Make sure your prescription is correct. Check new medications for interactions with others you're taking; don't expect your doctor to remember anything about you. You remember it for him. Together, you can ensure good medical care. What is wrong with being an "easy" patient? AS: An "easy patient"—someone who is passive and who would rather not bother her doctor with her own ideas, concerns, or grievances about her medical care—is a recipe for disaster. Winning the patient popularity contest will not get you the best medical care. A patient can be kind, considerate of her doctor's time and patience, and she can be a pleasant presence in the office, while asking the tough questions. Easy is not the goal. Smart is. Is there a temptation for doctors to tell their patients white lies, even a temptation for patients to tell themselves the same? AS: I don't think a doctor should ever lie to a patient, even a white lie. Given my medical journey, I am always on the lookout for even the slightest softening of reality by my doctors. I have learned to notice the subtleties of language. When my doctor says, "I think you should be fine on this new medication," I focus on the think and should red flags. If the new medicine lands me in the emergency room (which has happened), would it be fair to say that my doctor told me a white lie? No, it was more like a bad guess. As for patients telling themselves happy little lies, there is a fine line between optimism and kidding oneself. Now, I err on the side of strict candor and clarity. I keep records of my symptoms, with dates and careful descriptions, to keep me honest with myself. I want to believe I am well. I want to think my symptoms are due to nerves, something I ate, or a lack of sleep. But I will not allow myself that, not ever again. What should we, your readers, know about organ donation? AS: Organ donation saves lives. I would have died at 25 were it not for the gift of a donor organ. Thousands and thousands of people would be gone were it not for the same gift. So I ask you, please, to sit with your family and discuss your wishes about being an organ donor. Sign up at your state's organ donor registry, if you are inclined. Organ donation is truly a gift of life. Now, in my book, I am very honest about the chronic post-transplant illnesses I have and how I struggle with them - sometimes with grace and sometimes not. But the bottom line is this: I HAVE LIFE. It is a life with illness, yes, but it is LIFE just the same—and I have life for one reason and one reason only: the gift of a donor heart. So make your organ donor wishes known to your families. Keep in mind the lifesaving truth of organ donation. Spread the word. Ultimately you learn that you suffered from a rare genetic heart disorder. What was it? AS: The name of the disease is Arrhythmogenic Right Ventricular Dysplasia (ARVD), a heart disease in which the myocardium (heart muscle tissue) on the right ventricle wall is replaced over time by fibro-fatty material, causing major dysfunction of the heart. Accounting for 17% of all sudden cardiac deaths in young people, ARVD is usually inherited and there is no standard genetic screening test yet. First symptoms generally occur in early adolescence, are most often exercise related, and may include palpitations. The disease can cause sudden death. In its early stages, an EKG may show some abnormality, but this finding may be considered normal in women and children. If a family history exists, offspring should begin cardiac testing in their teenage years. Tests might include an EKG, echocardiogram, a Holter monitor (continually monitors the heart's rhythms), stress test, and MRI of the heart. None of these are painful or risky. My sister, who developed some heart symptoms in her 20s, has some degree of ARVD, but it is very mild, unlike mine. BUY THE BOOK Amazon Barnes & Noble Books-A-Million Borders Book Sense Grove/Atlantic hardcover (October 2007); ISBN: 0802118542; ISBN-13: 9780802118547