Tuesday, April 22, 2014
When I was 25 years old, I was living in Savannah, Georgia, when my life changed drastically. I had been battling a cold for a while and thought it was just my asthma symptoms. I ended up going to my doctor and receiving a diagnosis of walking pneumonia. Later that same day I experienced a sharp, throbbing pain in my right leg. I was rushed to the emergency room were it was then determined that I had a blood clot and needed emergency surgery.
It was such a scary time. The surgery took two days, and I almost lost my right leg. While the medical team worked to figure out what caused the blood clot, I underwent a series of tests. The doctors discovered that I had congestive heart failure and cardiomyopathy. My cardiologist had never really seen the type that I had and suggested that I see a specialist. I ended up at Duke University Medical Center in Durham. At the time, most of my family lived in that area.
I spent several months traveling back and forth from Savannah to Durham, still going through tests to try and determine the exact type and treatment options I had available. The traveling began to wear on me, so we ended up relocating to Durham. After all of the tests, the medical team still did not have a clear understanding of why I, at age 25, was experiencing congestive heart failure. They chalked it up to a potential virus attacking my heart.
Relying on medication alone to control my symptoms, I managed to continue forward for just over a year, but then my health worsened. After requesting an ECHO cardiogram, we could see that my heart was even more deteriorated. It was at this point when “heart transplant” was first shared. I couldn’t believe it! Even before being added to the transplant waiting list, I had to undergo more tests to see if I was a potential candidate. During one of the tests, I had to be admitted to Duke. My heart now required constant IV medicine to keep it pumping.
Duke confirmed that I was an eligible transplant candidate, and fortunately, my name was added to the UNOS database, near the top. My second chance came quickly. I was placed on the national transplant waiting list on Monday, and the following Sunday, I received the precious gift of a new heart. It was unbelievable and a miracle!
After the transplant I began to feel wonderful for about three months, but suddenly started feeling worse again. I couldn't do anything – no exercising, daily chores, bathing, dressing, or even getting up. My doctors began a series of test once again to figure out what was wrong. Several months later I was diagnosed with Mitochondrial disorder. It was a rare disease that can affect your body in different ways. There is no cure. I was given supplements, and I am currently doing much better. The doctors ended up reviewing a biopsy of my old heart and they confirmed the Mitochondrial disorder hadattacked my heart muscle, causing me to go into congestive heart failure.
This journey was such a shock and surprise to my family and me. Never in a million years did I think something like this would or could happen, especially at my young age. But, I will be forever grateful to the brave woman who said “yes” to being an organ donor, allowing me to live a normal, full life free of congestive heart failure.
