Organ Transplant: The Music of Life

Chapter Four

My Medical Mystery Tour Begins

Let’s Clear The Air

I chose to focus upon various situations leading up to my transplant, including during my childhood. From the time that I was developing from a kid into a teenager, many people saw some of my actions as mischief. Hiding the packs, wetting and freezing cigarettes, or burying the nicotine in the yard, was my desire to get rid of them due to my discomfort. During a trip to the allergist it was discovered that not only did I hate cigarettes, I am extremely allergic to smoke and tobacco. At the time, my mother was still smoking. I am proud to say that I never started to smoke. It appeared as though I always had a cold. I was being asked about this almost daily. People who stop, such as my mother, might still miss it for the rest of their lives. On the other hand, there are people who turn totally against it. Just to prove the theory, one of her last words was, “I want a cigarette.” 

My Experience With Tuberous Sclerosis

The first time that I heard the term Tuberous Sclerosis, I was fifteen years old. While listening to the doctor diagnose my mother, he observed that her skin, partially resembled the skin of an orange. When taking a moment to look at me, he determined that I have the disease as well. As a typical teenager, I assumed that he was talking about a mild skin condition. Throughout my childhood, I suffered at school, but I managed to graduate with my class. It was after I graduated from college that I discovered that I had epilepsy. I learned that the epilepsy was as a result of the Tuberous Sclerosis. It took a great deal of testing and medications to control my seizures, which have been under control since July 1993.

Tuberous Sclerosis is a genetic, inherited condition that affects the body differently in each organ that is affected. When I was about twenty-eight years old, the problems began with my lungs. The tubers in my lungs were similar to blisters popping, causing me to have surgeries for pneumothorax in 1994 and again in 1996. I went on an inactive transplant list as a matter of precaution. The disease caused a great deal of suffering for both my mother and I. My mother had very bad kidney problems as a result of the disease and underwent a kidney transplant in 1997. Although I was able to still handle a good walk in 1997, I had no idea as 1998 approached, just how difficult a year I was going to experience.

What Is Tuberous Sclerosis?

The Tuberous Sclerosis Alliance web sites print out describes it as tuber-like growths on the brain, which calcify with age and become hard or sclerotic. The skin is very much a part of the diagnosis, white patches, racial rash (facial angiofibroma) across the nose and cheeks, and skin giving the appearance of an orange peel. It is a genetic condition that has a 50% risk of it being carried.