HOW STRONG ARE YOU?

People often ask me what it’s like to be diagnosed with Alpha-1 COPD. Am I angry? How do I cope? The following is a five-minute talk that I was invited to give on the subject last year. The place was Sinai Temple. The occasion was Yom Kippur. Gordon Snider, my husband who died on June 8^th of this year, was still with me.

It was January 1993. I was about to turn fifty and the proud single parent of two beautiful daughters. I was also a successful New York State prosecutor. I ate healthy. I exercised regularly. Life was good. That is, until I got pneumonia.

        

After five days in the hospital and two weeks at home, I had my first check-up with my new pulmonologist, Dr. M. All I expected was permission to go back to work. Instead after a battery of tests and a lengthy physical examination, I was told I had chronic obstructive pulmonary disease or COPD.

According to Dr. M, all COPD was progressive and incurable. But then he told me that, in view of my otherwise good health, he’d tested me for a rare hereditary form of COPD called Alpha-1 antitrypsin deficiency or Alpha-1. “Odds are you don’t have it,” he cautioned. “But if you do, there’s an Alpha-1 therapy currently in clinical trials and, with a little luck, you could have ten more years.”

I have no memory of how I got home that day. But I’ll never forget the seemingly endless waves of grief that followed. Some days I could have sworn they were pulling me under in their wake. On the other hand, I wasn’t a stranger to grief and so I didn’t try to fight it; I simply endured it.

Until one day it finally dawned on me: Dr. M hadn’t given me a death sentence. With a little luck, he’d said, I could have ten more years! So I reached down deep inside and I told myself that I could get through this. In fact, I could get through it all on my own.

Shortly thereafter, Dr. M told me I had Alpha-1! At that moment in time, it was the best gift anyone could have given me! First I enrolled in the Alpha-1 trial. Then I began to take back my life. I also joined the board of the Alpha-1 Foundation and the search for a cure for Alpha-1. One of my fellow board members was a world-renowned pulmonologist. His name was Dr. Gordon L. Snider. One thing led to another and Gordon, now my husband and the love of my life, is with me here today.

Yes, life is still good. That said, for the past four years I’ve been on oxygen 24/7. And for the past three, my current pulmonologist has consistently reminded me that my only option left is a lung transplant. But if these past nineteen years and my husband have taught me nothing else, they’ve taught me that a lung transplant is not only difficult, but also risky. Put another way, a lung transplant is trading one set of problems for another, with no guarantees.

Over the last nineteen years, however, I’ve also learned that none of us truly knows how strong we really are until our lives or the lives of those we love are at risk. So last April, when my current pulmonologist looked me in the eye and told me that without a lung transplant I might not be around much longer, without missing a beat I told him I wanted to be evaluated. Likewise, even before my transplant evaluation was complete, I decided that if I was lucky enough to be accepted as a candidate, I would say yes.

In the end, it all came down to certain death within the next few years or taking a chance on life for five, ten and maybe even fifteen more. I chose life and today I’m awaiting a double-lung transplant at Brigham & Women’s Hospital in Boston. My job now is to stay healthy and strong so that, if I am so lucky, I can make the best of my “Gift of Life.”