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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.
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 believe it is wrong and harmful to categorize chronically ill people as being either entirely grateful or entirely ungrateful, or being terrific troopers or awful complainers. The truth is, most people fall somewhere in the middle. I know I do. And I know from the outpouring of mail that many chronically ill people see themselves somewhere in the middle as well. They have a whole range of feelings about living sick, everything from gratitude to despair, and yet they feel societal pressure to keep their talk strictly positive. This only makes the burden of illness harder for them to carry. 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—this 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: I was determined to write with complete honesty, even though I know that society frowns upon honesty when it comes to talking about living with chronic illness. People only want to hear about the grateful parts. And I am so grateful. But what has been missing from the dialogue—and what I tried to introduce in my book—is the concept of a person feeling and voicing both gratitude and the frustration and loss that can accompany chronic illness. Being open about the entire picture does not take anything away from gratitude or appreciation for life; it just tells it like it is.
AS: In my view, donor hearts are precious gifts that should go to those who understand not only the miracle of life that will come along with transplantation, but also the medical challenges and responsibilities they must take on forever after. By presenting a full and complete picture in SICK GIRL—one that does not shy away from the sometimes arduous illnesses and conditions that arise in a heart transplant body—pre-transplant heart patients can make a conscious choice about whether they are willing to bring full effort and strength to keeping the donor heart beating strong over time. My intent in being so very honest was and is to prepare heart patients so that they are more apt to be excellent guardians of their donated gifts of life. Donor families, then, will be able perhaps to have a greater degree of comfort knowing that the donated heart is being given to someone who will work hard for it long after the surgery, and who will give it longevity as best they can. Like Bette Davis said of old age, the same is true of heart transplant: It's not for "sissies." To portray heart transplant life as an easy, simple road does not promote the shoring up of strength and determination that are necessary to make the most of a donor heart. I believe that anyone who reads my book will understand very clearly that I was tiny steps away from death when I was just 25, and my life was saved NOT by a smart doctor or a great medicine or an implanted device, but by a wondrously donated heart that came from a family that showed incredible altruism in their time of loss and gave the gift of life. The plain fact that I live post transplant with serious medical challenges does not take away the lifesaving reality of organ donation.
AS: I think that first and foremost, above all, SICK GIRL is a love story. I live an extraordinary love story that still amazes me to this day. You know, I was only 24 when I wound up in the ICU waiting for a donor heart to save my life. And my boyfriend at the time, Scott, he stayed by my side for the 8 weeks I waited for a new heart. We had been dating only 6 months. He was just 25 years old. He certainly could have cut and run, and no one would have blamed him. But instead, he proposed marriage to me, right there at my hospital bedside, with all the tubes and wires and oxygen apparatus reminding him of how sick I was. Incredible. The doctor told Scott that if I was LUCKY, I would probably live about ten years after the surgery—which meant that Scott almost surely would be a widower in his thirties. But still, he wanted to marry me—no matter what. This act showed me the truest kind of love I had ever known. On that day, and continuing to this day, I try my hardest to be worthy of this exceptional love. And so when the going gets tough, and the transplant illnesses pile up and hit hard, I pull myself up and do my very best—always trying to live up to the wonderfulness of this love that sustains me and inspires me.
AS: The relationships are more real and open—and this can only be good. I no longer feel that the people in my life misunderstand what I live each day in my body. And this too is a positive change. No one likes to feel misunderstood in their day to day existence. We all want to feel appreciated for the things we do in a day—especially for the things that are difficult and take extra effort, but that go unnoticed by those around us. For instance, a stay-at-home mom does so many things for the house and the kids in a day, but many of them are not plain to see. And someone who works in an office also does things that are difficult and vital, but that are not appreciated openly. Sick people feel the same thing—we want others to understand that we jump hurdles and rise above medical challenges each day, even though we appear fine and unburdened, like it's all an easy ride for us. But, on the other hand, we don't want to be pitied and we don't want to be thought of as being a complainer. So, we just accept the fact that we are going to be misunderstood to some extent. It is an unfortunate circumstance. I still grapple with this issue—even after writing SICK GIRL. I am still trying to strike the right balance between sharing the reality of my medical challenges and keeping things to myself. But the book has brought about a higher level of understanding among my friends, family, and doctors. And while this doesn't take away the illness, it does make me feel a lot better.
AS: I have heard from many doctors who have read SICK GIRL and they all seem to take away something different from it. But one common theme is that the book serves as a reminder to doctors about how vital it is to see the human being behind the illness and not to make knee-jerk assessments based on appearances. Appearances can be dangerous. This is seen in SICK GIRL when I tell about when I first approached my family doctor complaining of vague cardiac symptoms. I was in law school at the time, 23 years old, busy, active, seemingly healthy, and my doctor took one look at me, saw that I appeared fine on the outside, told me I was a nervous law student, and sent me home. The fact was, my heart was failing—but my doctor did not see past my healthy appearance. Only good can come from reminding doctors to be thoughtful, careful, and thorough, and keep in mind that when it comes to illness, there is so much more than meets the eye.
AS: There is a problem that is not unique to heart transplant but is evident in its nature, which is that transplant is an absolutely lifesaving surgery and demonstrates a high level of medical/scientific accomplishment along with phenomenal human altruism and an added aura of the miraculous (even though heart transplant is based in hard science that is clearly human-derived.) The experience for heart transplant surgeons and physicians alike can be a heady one characterized by a heightened state of surgical, medical, or clinical zeal. And while the patient is equally thrilled and eager to carry out and carry on the magnificent saving of life that has come her way, the plain fact is that a post heart transplant existence is rife with serious health challenges, and the thin line between life and death that the patient will forever tread makes for a division between the often overly fervent surgeon/physician and the sobered post heart transplant patient in the aftermath of the medical "success" she represents. It seems to me when it comes to heart transplantation, there is an inherent conflict of interest between doctor and patient. The doctor measures success by the physiological homeostasis of the body whereas the patient might view success in terms of how much she has been restored to her pre-illness quality of life. I see this as, in essence, an ethical and practical problem in heart transplant medicine (and perhaps in all of medicine.) As I observed in SICK GIRL, after 17 years of engaging in what felt like a concerted effort on my part and the part of my transplant physician for continued "life" against the odds, I realized that we weren't fighting for the same things anymore, we weren't on the same side of the battle. My doctor seemed to be collecting life years like Medals of Honor. I just wanted to feel okay for an hour or two every now and then. And it turned out that my physician's goal would prove much more realistic than mine, thus putting an emphasis on the physiological homeostasis once again and usurping my freedom of choice in that I would be viewed as an ingrate or a patient with a bad attitude or psychiatric disorder if I dared challenge the assumed miracle of my post transplant life. No matter how narrowly based or blind the enthusiasm for medical success as seen through a physician's eyes, it is taken on by society—and by many patients—as the correct view and the final word. This is invalidating to the journey of illness that is highly personal and individual to each patient. Understanding must begin with the doctor/patient dialogue and an opening up of the unspoken conflict that may underlie each party's objectives and goals.
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.
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. 
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Grove/Atlantic hardcover (October 2007); ISBN: 0802118542; ISBN-13: 978-0802118547 Grove Press paperback (October 2008); ISBN: 0802143873; ISBN-13: 978-0802143877  |
      
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