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AS: In my 17th post-transplant year, I experienced a pivotal eventa 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.
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.
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 dayeven 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 canthat 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.
AS: More important than the price I paid were the lessons I learned:
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 careis 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.
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.
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 sameand 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.
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 Grove/Atlantic hardcover (October 2007); ISBN: 0802118542; ISBN-13: 9780802118547 |
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