My name is Brian and I am the very grateful recipient of a heart transplant which I received at Cedars-Sinai Hospital in Los Angeles, California. I was born in South Africa 65 years ago with a rare congenital heart condition known as Congenitally Corrected Transposition of the Great Arteries (CCTGA) as well as pulmonary stenosis and dextrocardia.
The fact that doctors knew I had a problem when I was just one-year old and a complete diagnosis was known when I was 15 was in and of itself amazing considering that that occurred 50 years ago. I went to Guy’s Hospital in London when I was six and had a catheterization when I was 12. I remember my parents viewing it on an 8mm projector!
The condition reversed my ventricles with the right ventricle becoming the pumping ventricle. That ventricle, which normally pumps blood to the lungs, is designed for a pressure of 25/5 while it was actually subjected to 120/80. The doctors predicted that I would be fine until I was 55 when I would need a valve replacement. Even more amazing – they were correct as most people do not live this long without an issue. I was 57 when the ventricle deteriorated from the high pressure and I started having trouble with stamina and breathing. It was 2004 when I was told I was in Stage II heart failure and would eventually need a transplant. Up until then I had lived a fairly normal life as an IT professional, I was happily married and had three wonderful children. I played sports like doubles tennis, soccer goalkeeper, etc.
In 2006 a fortunate, in retrospect, event happened. I had numerous respiratory issues over the years with many bouts of pneumonia and bronchitis. I was finally diagnosed with Common Variable Immune Deficiency (CVID). I started receiving infusions of Immunoglobulin G (IgG) (which are antibody molecules) on a monthly basis. For those who understand transplants and rejection, this surely benefitted me later as I had no antibodies that would inhibit transplant.
In 2004, I consulted with Dr. Copeland at the University Medical Center (UMC) in Tucson. He became aware of my anatomy but told me I did not need a transplant at that point in time. In the years following, I was treated for heart failure by doctors at another facility but was considered a high risk candidate for transplant. I returned to Dr. Copeland at UMC in late 2008. He did a right heart (in my case left heart!!) catheterization and determined I had pulmonary hypertension and a transplant was not yet possible. With little time left to live, he inserted a left ventricular assist device, LVAD (RVAD in my case). He became confident that transplant was feasible and he believed, while others did not, that the LVAD would correct the pulmonary hypertension. He would later be proven correct. In July 2009 a catheterization was done and I was listed for transplant in September 2009.
As others have said, the LVAD kept me alive while waiting for a transplant but it was not a panacea. It did not fix valves, the right side of the heart or other issues. It required my wonderful wife to do a sterile dressing three times per week for many months. It was not an easy device to live with but what it did do was allow me to see my grandkids, visit friends, go out for dinner, go to the supermarket and the movies and I was able to continue to work full time from home.
In October 2009, I received THE call. We packed up all the LVAD gear and I drove myself through rush-hour traffic in Phoenix to Tucson for my heart transplant. I was prepped for surgery, wheeled into the operating room and was anesthetized. But physical inspection of the donor heart found it to be hard and diseased, which had not shown up in the pre-testing, and the transplant was called off. That was the first of five false alarms over an 18-month period.
In June 2010, Dr. Copeland left UMC and I was told they were no longer able to do my transplant due to the complexity of my heart issues. They contacted Jenna Rush, Transplant Coordinator with Cedars-Sinai Heart Institute. I went to LA for an evaluation and was listed shortly thereafter. Air ambulance service was pre-arranged and I began my wait. On one occasion, I presented with cold symptoms in the morning and received THE call again that evening so I had to decline. That gave rise to a humorous anecdote. My wife was with our grandkids when I called her and gave her the news. My eight-year old granddaughter started crying, but my five-year old grandson Craig said, : “Talia, don’t cry. The doctor will put the heart in the fridge until Grandpa is better!” Disneyland was in their future! On another occasion I was waiting on the runway at Scottsdale Airport for the air ambulance to arrive (which was 5 minutes from landing) when the transplant was again called off. It was a scary rollercoaster ride.
On April 27, 2011, Cedars Sinai and Dr. Trento found the right heart. My wife had left town that morning to visit our grandkids in New York. Our daughter flew with me to Los Angeles in a small Lear Jet air ambulance. We arrived there four hours after the call. Surgery started at 5.30 a.m. and my wife arrived from the east coast midway through the surgery. Bill Sears, Head of Cedars Heart Transplant Ambassadors, sat with my family throughout the surgery offering encouragement. The volunteer organization at Cedars is yet another fantastic component of their care. Dr. Trento completed my complex heart transplant surgery successfully.
The rest, as they say, is the rest of my life. I unfortunately needed a pacemaker but was discharged after 13 days. We stayed in Los Angeles for biopsies and post-transplant care. My body was extremely atrophied and recovery was slow, but I walked a lot and had some home physical therapy. After three months, I returned home to Phoenix but fly to Los Angeles monthly for checkups. I was fortunate to be entered into the Allomap trial for rejection and so have only had eight out of the 13 biopsies. I have had one small scare but no real rejection episodes. I started cardiac rehabilitation and have slowly gotten stronger. Last week I completed the AHA 5 km Heart Walk.
It was a long journey but the story has a happy ending. This is due to many people and many things, not the least of which is a supportive family. I am eternally grateful to my donor family whose generous donation made writing this story possible and to whom I have finally written after much contemplation.
Additionally, I am deeply indebted to Dr. Jack Copeland, formerly of UMC in Tucson as well as all the doctors, pharmacists, nursing staff and technical staff there who gave me not only excellent care, but became personally involved and treated me as much more than a patient. They enabled the future for me. I would also like to thank Jenna Rush, Transplant Coordinator, Dr. Alfredo Trento, Dr. Lawrence Czer, Drs. Kittleson and Patel, as well as many other medical professionals at Cedars-Sinai.
There are so many ways to donate – organs, money, emotional support and/or time.
My message is simple. Please be a donor. It saves people and changes family’s lives.