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Bar News - April 8, 2005 Opinions: A Lawyer's Life: Dead Man Walking By: John Doe The author of this article, a New Hampshire Bar member on active status, asked not to be identified. What do NFL Football Hall of Fame running back Walter Payton, pop musician David Crosby, and New Hampshire resident John Doe have in common? Everything, and nothing: a 'trick' question. Walter Payton died from a relatively rare form of liver disease/liver cancer. David Crosby has/had liver disease, but lives today, the recipient of a liver transplant. John Doe has several relatively rare forms of liver disease [these diseases usually appear in groups], and waits for the day he is 'sick enough' for a liver transplant. In 2000, about 360,000 people were treated for some form of liver disease in the US. About 29,000 Americans died of liver disease in 2001. About 16 people die each day awaiting an organ available for transplant. There were 17,471 people on the liver transplant waiting list on July 31, 2004, and only 5,671 liver transplants were performed in 2003. I am John Doe, and I just turned 49 years old. I have what is otherwise a pretty normal life. I'm divorced, and have an 18-year-old daughter ready to graduate from high school. I work full-time for a major employer in this state. I have dreams of seeing my daughter graduate from college, get married and have children, and even dreams of my own retirement, though some months I struggle to pay all the bills. I have been fighting liver disease(s) for at least 10 years. It's actually unclear how long I have had these diseases as, like many, I went through years of misdiagnosis and ineffective or no treatment as the medical establishment tried to determine what was wrong with me. Many of the symptoms I have today can be traced back through my childhood, although I was never considered a sick child. I played high school tennis, played in the marching band, ran in a cross-country club and generally did whatever I wanted. I did, however, go through periods of 'mono,' weight loss or weight gain, and aching joints that left me unable to do things for months at a time. Currently I am diagnosed as having autoimmune hepatitis, primary sclerosing cholangitis, primary biliary cirrhosis and cirrhosis of the liver. All are potentially, ultimately, fatal. They are diseases that can be treated or managed with varying degrees of effectiveness, but cannot be cured. The effects of these diseases on my lifestyle or quality of life vary from day to day. Some days they have little outward effect other than making me quick to tire. Other days I am virtually unable to function, as I go through bouts of extreme fatigue, diarrhea, muscle and joint aches, and mental confusion. To maintain this quality of life, I take about 17 pills a day [it varies] and some liquid medicines. The cost of these prescriptions is about $1,500 each month. I am fortunate to have good health care coverage. This course of treatment keeps me well enough, at this point, to avoid going onto the liver transplant list. Barely a week goes by that I do not have an appointment with some physician, either my general practitioner or a specialist. I find coping with this situation, as you might expect, depressing, and it regularly sends me to see a counselor or psychiatrist. Sooner or later, however, I seem destined to join the transplant waiting list. And the numbers are staggering: of the 17,000 who needed replacement livers in 2004, only about one-third (roughly 6,000 people) received them. Of those who received them, the survival rate was about 30 percent. That means of the 6,000 liver transplant recipients each year, about 1,600 survive the process. And around 16 people die each day waiting just to play this lottery with its long odds of winning. Sooner or later, I will play this lottery. But you can help reduce these odds: each year roughly 40,000 Americans die in auto accidents and the vast majority of their organs go 'unharvested' and are unavailable to those who so desperately need them. Sooner or later, I will need a liver: maybe yours. As a resident of New Hampshire, you can indicate your wish to be an organ donor on your driver's license or state ID when you apply for or renew it. It is, however, very important your family know of your wishes because, should anything happen to you, they will be the first to be consulted about the availability of your organs for transplant and if they don't agree, it won't happen. Unfortunately, there is no national registry for people who are willing to allow their organs to be transplanted in the event of their deaths. Probably the best way to legally express your wishes is through a living will or a durable power of attorney for health care. There are generic forms available on the Internet and through advocacy organizations that are sufficient to make your wishes known. Copies should be given to your family, your primary care physician, and the hospital you frequent. So I urge you, from my selfish perspective, to consider being an organ donor, and to make those wishes known to your friends, to your family, and to your health care provider. The life you save may be mine. |
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