In the summer of 2008, Bob Goodman was leading a healthy and active lifestyle – exercising, eating the right foods and getting regular health checkups – nothing unusual there, except in how ideal his lifestyle appeared.
That is, until he went to a routine doctor's appointment. Sitting with a blood pressure cuff on one arm and his pulse being taken on the other, Bob could tell something was not quite right. According to the doctor, his heart rate was in the 30s -- shockingly low, even for a fit guy like Bob.
Diagnosed in the Nick of Time
What soon began was a rollercoaster of events, fraught with misdiagnoses, ineffective treatments and endless questions of what could possibly be the cause.
After six months of testing at a local hospital to explore the reason for his low heart rate, Bob still didn't have a diagnosis. It's at that point he decided it was time for a second opinion. He traveled to a distant teaching hospital, where doctors diagnosed him with bradycardia - a heart rhythm disorder. And, at the advice of his physicians, he opted to have a pacemaker implanted to help regulate his dysfunctional heart rate.
Following the procedure, Bob felt good. So good in fact, then he went on to train for and complete a half-marathon shortly afterwards.
Then, a drastic turn of events struck in the summer of 2011. Bob began having recurring episodes of what he thought was heat stroke - he felt light headed and out of breath.
After being evaluated by a local cardiologist, it turned out not to be heat stroke at all but a potentially fatal cardiac arrhythmia called ventricular tachycardia (VT). Bob's physicians recommended his pacemaker be replaced with a new one that included an Automatic Implantable Cardioverter Defibrillator (AICD). The AICD would give Bob's heart a shock if he started having life threatening arrhythmias. Again, life for Bob went on, months passed, and he was back to living his healthy lifestyle.
At a later check-up, it was quickly apparent that Bob had been extremely lucky. His implanted defibrillator was working, but it was not helping his cardiac arrhythmia. In just two months, his heart had gone into VT an astounding 2,700 times. With his options for a cure dwindling, Bob elected to have a cardiac ablation, a procedure used to correct rhythm problems by destroying the tissue that is responsible for the arrhythmia. Unfortunately, the ablation was not successful, and Bob was still going into VT. Something else had to be done. He needed a specialist that was an expert at specialized types of cardiac ablation procedures not available everywhere.
Enter Penn Medicine
Knowing that it was outside their realm of expertise, Bob's doctors at his local hospital referred him to David Callans, MD, because of his reputation for performing specialized cardiac ablations. Bob knew that research was important when choosing a provider because he had worked in healthcare for years. So he began asking his friends and family if they knew Dr. Callans at the Hospital of the University of Pennsylvania. The consensus was in, and, as Bob puts it, all remarked that "No one has more experience."
The answer was there
After watching the arrhythmia continue to occur even after a highly specialized ablation was performed, Dr. Callans knew there had to be an underlying reason it wasn't working. Dr. Callans made a diagnosis that no one else had made and one that would save Bob's life, sarcoidosis - an extremely rare condition where the body's own immune system attacks targeted organs. Sarcoidosis most commonly affects the lungs, but for Bob, this disease was attacking and destroying his heart. A PET scan was performed and his diagnosis was confirmed.
It's at that point that Dr. Callans referred him internally, to heart failure specialist Lee Goldberg, MD, and an individualized plan was put together. A sarcoidosis expert from Penn, pulmonologist Jessica Dine, MD, was consulted because of her experience in treating this rare condition that most commonly affects the lungs. Bob was put on steroids, and his condition improved. After just 10 months, treatment was stopped. Bob was getting better, and the cardiac sarcoidosis remained dormant - for a while.
It was just a matter of time
The following summer, Bob was not feeling well, again. He was feeling bloated and was retaining fluids. After tests to rule out other conditions, the answer became quite clear. His heart was failing him. In just a few short years, Bob Goodman went from being an active, middle aged man that took steps to prevent cardiac disease to being placed on a heart transplant waiting list, where time was not in his favor.
The Heart Transplant Team at Penn took over his care. Unusually, just days later, Bob was notified that a heart was waiting for him. His life was about to change, yet again. In November of 2013, Bob Goodman received a new heart with his wife of 37 years, Patti, and his 21 year old daughter, Stephanie, standing by in the waiting room.
For five weeks after the transplant, Bob was taken care of day in and day out by hospital staff, undergoing extensive rehabilitation. On the day he walked out of Penn with a new heart, Bob had the same old spirit and healthy attitude that he had when beginning this journey just a few years before.
Bob knows that his story and his condition are incredibly rare, which is partly why he is so adamant about sharing his journey with others. In coming to Penn, he found more than answers to a medical mystery; he found a level of care, compassion and understanding that few institutions can match. And in doing so, he regained the zeal for life he might otherwise have lost.