From Near Death to New Life with Another Person’s Liver: The Very Personal Story of a Liver Transplant

The “Upcoming Book” notice went out to you without an explanation. For those wondering what it’s about, the following is from the introduction to the book. Jim and I have the first draft of the book done, and we hope to finish it by the end of the year. I would appreciate any comments you have, especially any suggestions for a title.

 

Despair had me in its grip the summer morning I entered the parking garage attached to my office building as I realized I had nowhere else to turn to save my husband’s life. During a gradual three-year deterioration in Jim’s health I watched him go from an athletic, robust fifty-year old real estate developer and avid bicyclist to a thin, weak, grey-skinned and chronically ill patient. We had run out of alternatives to treat his critical loss of liver function – Jim needed a liver transplant to survive.

The most terrifying moment of our ordeal was not when Jim’s doctor told him that he needed a liver transplant, but rather that his HMO insurance coverage would not provide or pay for the surgery. We went from shock to denial to naïveté to determination that we were going to deal with this challenge – but how could we pay for a $250,000 medical procedure and, at the same time, navigate a complex, insurance- driven medical system without “coverage.”

This is the story of how we accomplished that —  with the love and support of friends and family, persistence, and good luck. We learned a great deal about how many people are involved in receiving a life-giving organ – from a donor we’ll never know to our closest family members and lots of people of good will in between. And we learned about how, when life changes dramatically, to hold onto what’s important in moving towards a new life.

Few of us are lucky enough to never need a doctor. Everyone else has had illness or challenges like ours. And every single person fortunate enough to grow old will deal with the transformational changes of aging. How to find new things to do when we can no longer do the familiar things, and how we go from doing to being is what this story is about.

Jim and I decided to write about our journey with the hope that others could benefit from some of the lessons we learned. It’s the lucky exception who doesn’t face a personal health challenge. I believe there are some common experiences from which we can share not just coping strategies, but even attitudes and perspectives from those of us who have already been there.