Tuesday, October 15, 2013

A DETERMINED MAN







                             
If I were limited to one word to describe my late husband Gordon, I would call him “determined.” Certainly his career as a pulmonary researcher and physician was marked by his determination to solve the riddles of COPD and Alpha-1 antitrypsin deficiency. Following his death, on June 8, 2013, the Alpha-1 Foundation described his professional contributions, in part, as follows.

“We lost a pioneer and dear friend with the passing of Gordon Snider,” said John Walsh, Alpha-1 Foundation president and CEO. “We all appreciate that he leaves an incredible legacy and we owe a debt of gratitude for his leadership, vision, tenacity, patience and friendship . . . Dr. Snider’s leadership helped the Foundation establish a robust research agenda.”
Bartolome Celli, MD, a professor of medicine at Harvard University and the Pulmonary and Critical Care Division of Brigham and Women’s Hospital . . . quot[ed] the Cuban poet Jose Marti: “The most important signature of a human is his written word and the memory of long lasting friends.” The poet’s words are “applicable to this remarkable man who touched us all. Yes, we lost a friend but his ‘signature’ will last forever,” Celli said.
In a career that spanned more than 40 years, Snider showed how emphysema is created and changed the direction of lung disease research for decades. He founded the pulmonary section of the Boston University School of Medicine and was chief of medical service at the Boston VA Medical Center for 14 years.
He served as president of the American Thoracic Society. He trained dozens of young researchers. He served on the Pulmonary Disease Advisory Board of the National Heart, Lung and Blood Institute of the National Institutes of Health and innumerable scientific committees. And he conducted his own groundbreaking research on lung diseases.
In 2009, the Alpha-1 Foundation presented Snider with a lifetime achievement award at an event attended by more than a hundred of his colleagues and researchers he trained – many of them now leading researchers and clinicians themselves . . . Celli served as master of ceremonies and said, “Dr. Snider is one of those rare giants, a triple threat — a great researcher, a superb caregiver and teacher.”

Gordon officially “retired” in 2000, but that didn’t stop him from going to the office almost every day. He loved interacting with the medical students and residents. It was a mutual attraction I’m told. He also used that time to co-author a number of research papers and, to the best of my recollection, to write at least one long article on the history of lung research. In addition, in his “free” time, Gordon continued as a member of the scientific leadership of both the Alpha-1 Foundation and the American Lung Association.

But Gordon’s determination wasn’t limited to his professional life. When I first met him, he was equally determined to beat what he told me was a genetic predisposition to heart disease on both sides of his family. To that end, he adhered to a strict diet and an equally strict regimen of daily exercise. Then one morning, barely two months after his 81st birthday, Gordon’s genes finally caught up with him.

That morning I awoke to the sound of Gordon stumbling on his way up the stairs with my morning coffee and paper. Typical physician, he had a ready explanation. I wasn’t to worry he said. An hour or so later, however, he tried to jot down a phone number and his fingers wouldn’t cooperate. This time I called the doctor. She said we should go to the emergency room. Thankfully Gordon agreed.

Unfortunately, Gordon was having a stroke that, over the next twenty-four hours, immobilized his right side and significantly impaired his speech. Surprisingly, however, he wasn’t upset like I was. Instead, his spirits were up. After all, he said, he was lucky to have lived so long without any other major medical problems. 

From that point forward, Gordon never looked back. Our mutual mantra became, “Life’s still worth living because it beats the alternative hands down.” Rather than mourning his life pre-stroke, Gordon developed a two-step plan. First he would work hard to recover as much as he could and then he would reinvent himself. To find out how he did it, you’ll have to wait for my next post, “A DETERMINED MAN – PART II.”







Monday, October 7, 2013

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 8th 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.”