My story begins with my twin brother, Andy, when we were both living in Los Angeles. Andy was always far more physically fit than me. In fact, he ran marathons, loved mountain biking, and surfed. Yet, at the age of 48, he began having chest palpitations. His internist told him, “Drink less coffee,” but his symptoms persisted. He was eventually diagnosed by a cardiologist with dilated cardiomyopathy. Neither of us knew what that was. His cardiologist told us that dilated cardiomyopathy is a disease that affects the heart’s ventricles and atria, the lower and upper chambers of the heart. It causes the ventricles to stretch and the heart to enlarge. An enlarged heart does not pump blood very well. We were told that the disease is progressive; that there is no cure, and that if things got bad enough, Andy would need a defibrillator and pacemaker. I’d like to note that Andy’s coronary arteries were clean as a whistle. Andy’s diagnosis was especially devastating to my children, Matthew and Sophie, who dearly loved their uncle. Eventually, Andy would get the defibrillator and pacemaker.
Despite these interventions, Andy’s condition worsened. In March of 2001, he collapsed. His defibrillator shocked his heart many times but was unable to restore his heart’s function. He lingered in the hospital's ICU for five days where he suffered further heart attacks. We were told that his brain was irreparably damaged from lack of oxygen. I had to make the difficult decision to take my brother off life support. I knew he would not have wanted to live without all of his faculties.
I never had a clear answer as to what caused my brother’s disease. The doctors said it could have been viral or genetic. When he died I was not offered genetic testing by my cardiologist. I was simply followed using routine echocardiography.
In the ensuing years, everything seemed fine. However, in 2008, I began having the same chest symptoms my brother had so vividly described to me 12 years earlier. I, too, now had dilated cardiomyopathy and my coronary arteries were normal just like Andy’s. Now, there was no mistaking that this disease was genetic in our case. The course of my disease was like a rerun of my brother’s. I had to medically retire from my job as a trial lawyer with the state of California, a job that I loved but could no longer perform. For those of you fortunate enough not to have experienced serious heart disease, it is hard to overstate how it impairs every aspect of daily living. Worse than even living with the disease was seeing my now adult children and my wife suffer, watching my energy and vitality decline. Although, unspoken, I knew they were all convinced that I would soon die. For me, what was most distressing was the thought that I may have passed potentially dangerous genes to my children.
I too, received a defibrillator and pacemaker. On one frightening day, my heart began to race at an incredible rate. Fortunately, the defibrillator shocked my heart back to a normal rhythm. My cardiologist told me that as my condition worsened, the defibrillator might not save me. At that point, a heart transplant was my only option.
Since I live in the Bay area, Stanford Medical Center was my best option. The doctors and nurses there fully evaluated me as a candidate to get the on the transplant list. This involves evaluating not only ones medical condition but the support network one will need to have a successful recovery. I was extraordinarily lucky to receive my new heart only one week after being listed. At the time of the transplant I was 63 years old.
It’s hard to put into words what getting a second chance at life means when death was so close and seemed so certain. Not to express the amazing joy at simply feeling normal again. To walk a block without exhaustion, to enjoy a meal, to know that I will live long enough to see my children achieve their dreams and start families of their own. These are things that many of us often take for granted. I now am able to serve as a judge pro tem in several east bay counties, work that is much needed by our undermanned court system. I also do pro bono work for war veterans. My energy level has fully returned. My wife and I recently returned from a one month European vacation where I walked up to six hours per day. I am blessed and grateful for this second chance at life.
In my former professional life I was a PhD biomedical scientist who applied for and received grants from the National Institute of Health. It is hard to over-state the importance of funding basic scientific research. The major advances in cardiology such as new drugs, defibrillators, pacemakers, genetic testing and stem cell treatments would not have been possible without the basic scientific discoveries made 10 and 20 years earlier.
Research scientists, like my own Stanford doctors, are committed to advancing the state of knowledge in cardiology. Their breakthroughs save lives and are the cornerstone of the life sciences industry. For my children, emerging genetic markers are now being used to track their cardiovascular health. These were not available 10 years ago. It is my hope that all of us will be advocates for basic funding for scientific research.