It Took Courage: Living with Donor Hearts

Through my early years of childhood, I always knew there was something special about my older brother Clayton. As I grew older, I came to understand that he possessed a trait not many his age can claim, courage. Clayton was born with multiple heart defects. He endured three closed heart surgeries, two open heart surgeries and multiple heart catheterizations before the age of four. At the age of ten, he developed cardiomyopathy. Just three months after being diagnosed and drug treatment failing, he was told his only chance of survival was a heart transplant. He faced this like the true soldier he is. To him, it was just another bump in the road. It was at this time I realized how brave my brother is.

Clayton was so near the end of his life that he was hospitalized until a donor heart could be found. As his fifty pound body was ravaged by powerful drugs and an extremely weakened heart, he did not give in to the disease. His surroundings changed from the freedom of his home to sterilized walls with machines keeping him alive. For two months he lived in a Cardiac Intensive Care Unit. In spite of his surroundings, he made the most of each day by pulling pranks on the medical staff and making brownies and cookies to share with his new extended family.

While in the hospital, I watched as Clayton’s health slowly deteriorated. He went from a vibrant brother to one who could barely move without help. Through all of this, he continued to face each day with a smile and acted as though nothing had changed. Amazingly, his spirit was not broken and his love for life seemed to blind us to the fact that Clayton was indeed dying. Within six weeks, my family and Clayton were told a heart had been found. For a year after his transplant, his body warred against his donor heart. For the six years he lived with this donor heart, his whole lifestyle was changed in an effort to protect him from diseases which could take his life. He never complained. He accepted with quiet grace the limitations that were placed on him and lived life to its fullest.

By the age of seventeen, Clayton’s heart had a low ejection fraction. The tests run to determine the cause left doctors puzzled. Nothing could be found. He began to weaken but still tried to maintain his daily routine. In March of 2006, his cardiologist broke the news to us that Clayton had graft coronary artery disease in almost every artery in his heart. His only chance of survival would be another heart transplant.

Because Clayton was seventeen, his cardiologist talked openly with him about the risks of a second transplant. When asked if he still wanted to be listed, Clayton quietly replied, “Yes.” He seemed to stand taller as he faced another life threatening challenge.

Presently, Clayton is nineteen and filled with dreams of becoming a mechanic and firefighter. He grabbed the chance to work at an automotive repair shop with the hope he could learn the trade and attain the knowledge. Just last month, Clayton’s cardiologist gave him medical clearance to pursue his desire of becoming a firefighter. He enrolled in the class only to be informed the State will not allow him to become certified. Again, he refused to give up. He is attending those classes even though he will never be certified.

I am constantly in awe of my brother. The challenges he has had to face seem almost insurmountable. He sees them as minor obstacles around which he must navigate. During biopsies, in which minute pieces of his heart are taken through the main artery in his neck, he refuses any medication. Even though these are risky procedures, Clayton knows they are essential to his well-being. Where I see these challenges as mountains, to Clayton, they are just hills he climbs. They are normal occurrences in his everyday life. He views himself as just an ordinary young man with dreams and desires common to many. To Clayton I say, “It takes courage to walk in your shoes.”

Charlie Drake

March 2, 2008