Dear Friends,
A colleague of mine reports to a dean in the college where he teaches. My colleague said to me one day, "Guess what I learned?" I expected to hear of a discovery in the world of statistical theorems. Instead, it was a sad human statistic. "I found out that my dean had a fiancé who died of leukemia." I froze inside as I did anytime I heard the words "died" and "leukemia" used in the same sentence. "It was in the early 1960's," he said. "There were no transplants then."
"No transplants then." The words gathered speed as they twirled around in my mind. Had I been born in another time or place, I would have been a sad statistic, too. A profound sense of loss settled over me. I grieved for the dean's loss of his fiancé, for his fiancé's life cut short in her prime, and for the loss of what they could have had together. I also thought about my own survival from the same disease that took this young woman 40 years earlier. Only a few years after she died, the first transplant was performed at the University of Minnesota in 1968.
Today, nearly 20,000 bone marrow transplantsare performed every year in the United States. Mine was in 2007 at age 46. I recall my anticipation and fear in the transplant center awaiting the testing of my five siblings as potential donors. Would one of them be a match? Would I live? I worried. When the news came that one sister was an exact match, joy and relief flooded over me. I won't die, I thought. I have a second chance at life! This was the crucial moment when I knew that, no matter what lie ahead, I would hang on for dear life, because life had suddenly become very dear.
My determination to hold on proved lifesaving, and with the support of others, I have been able to celebrate five more "second birthdays." It has not been celebratory every year. At times my post-transplant conditions threatened to overwhelm me, and I would ask why this happened to me. I wondered if other patients were going through the same disabling conditions. Or was I alone in my post-transplant world of ongoing medical visits, loss of work and wages, insurance issues, and emotional turmoil?
When the nbmtLINK sponsored a teleconference with the National Institutes of Health on chronic Graft vs. Host Disease (cGvHD), I jumped at the chance to join the discussion. I found the information and connection with others invaluable in helping me understand what was happening to my body and mind, and how to get help. I also felt instant camaraderie with the other participants who indeed were going though many of the same things. As much as family, friends, and health care providers were sympathetic, only other transplanted people could really articulate what life was like now.
Through teleconferences, publications, support groups and other services, the nbmtLINK has brought together a caring community of doctors, nurses, social workers, patients, and survivors to address a myriad of conditions. Most importantly they have provided practical options for improving physical health and emotional well-being after transplant. At last I have found a place to learn and grow with others who really understand. I was even inspired to sign up for their annual 2nd birthday card to remember the occasion of my transplant as a happy one.
Whenever I hear of a patient dying because a donor was not found, I feel the same sadness I felt for that young fiancé who didn't have a chance against leukemia decades ago. But I also feel strongly encouraged to speak on behalf of others who deserve a second chance at life as much as she and I did. Part of that chance involves getting the word out about donor drives like "Be the Match." The other part is participating in programs that provide educational, social, and emotional support to anyone affected by bone marrow transplant. In turn, the better my health and well-being, the sooner I am able to give back in appreciation of the chance to live a longer and fuller life.
Medical science has prolonged life, but there is a trade-off to survivorship: living longer with difficult challenges that affect the quality of life. The work of the nbmtLINK is vital to respond to the needs of thousands of patients, caregivers, and families with resources that will improve their lives after transplant. Please remember the patients who didn't survive, and those who did, and give generously so that more of us can give back in appreciation of that second chance.
Thank you.
