Duke Transplant Friends

I was diagnosed with Cystic Fibrosis when I was four years old. My lungs were not affected at that time, but I was having malabsorption problems and unable to gain weight. I was first tested for CF at 16 months, but due to a malfunction of the equipment, I tested negative. My pediatrician then started me on several different diets, including a gluten-free diet to try and help my body better absorb food. Nothing seemed to help, so at the age of four I was admitted to the hospital to have more tests run. They once
again tested me for CF, which turned out to be positive. My physician told my parents that I would probably not live past the age of 20, and gave them instructions on how to take care of me.

I lived a very normal childhood, despite having to take medication with each meal to absorb my food and antibiotics to prevent infection in my lungs. My parents let me get involved in any sport or activity that I wanted. They never held me back from doing something, because of my illness. As a teenager, I taught aerobics and was a cheerleader in high school. At the age of 15, I started to have a nighttime cough, so my pulmonologist started me on a nebulizer once a day, where I had to inhale a vaporized antibiotic into my lungs. The purpose of this was to prevent infection. Pseudomonas auruginosa was first found in my lungs at the age of 16. I increased my nebulizer use and continued to do aerobics to help reduce the secretions in my lungs.

I went to a school for fashion merchandising when I graduated high school in hopes of one day becoming a buyer for a retail store. After I graduated, I started working as an assistant buyer for a department store in Roanoke, VA. I later decided that I wanted a more rewarding career and started at a community college to take pre-nursing courses. It was then, at the age of 23 that I was first hospitalized with a lung infection. After going to community college for two years, I transfered to Radford University. In my second year of nursing school, Glenn and I were married. I graduated in 1995 with a Bachelor of Science in Nursing degree.

Six months after graduating, I gave birth to a beautiful, healthy baby girl. Casey is such a blessing to Glenn and me, because I never knew whether I would be able to have children or not. I had some complications during my pregnancy, but all of them were expected. I went back to work 8 months after Casey was born, and had to go on IV antibiotics for the second time when Casey was one year old (thankfully, I was able to do them at home without being hospitalized). I worked for two more years, before Glenn was transfered from Roanoke, VA to Charlotte, NC with his job. We moved to Mooresville, NC in Oct. 1998.

In February 1999, I came down with the flu and was hospitalized for the second time. I was placed on IV antibiotics, the usual treatment for these infections. In the past when I was placed on an IV antibiotic, I would notice improvement within a week and be able to stop the medication at about three weeks. This time when I stopped the antibiotic, my fever went back up and I had to immediately restart it. I again stayed on the medication for three weeks. My pulmonologist then stopped treatment again thinking that the infection was gone. Glenn and I went to Texas to visit a friend and while I was there, I started running a temperature of 103 degrees. When I returned home, my pulmonologist started doing various diagnostic tests to see what was causing my recurring problems. We found out that I had a mycobacterium in my lungs. There are many different mycobacteriums out there, and Tuberculosis (TB) is one of them. Since the preliminary test didn't show which one it was, and it would take two to three weeks to get the final results back, my physician had to start treatment on me for TB. This consisted of taking four different medications and being placed on isolation until the final results came back. I couldn't leave the house without a mask on, and I worried the entire time that I had infected my husband and daughter.

I started having nausea about four days after starting on these medications. I couldn't eat or drink much because of it, so I quickly became weak and was eventually unable to get out of bed. Being a nurse, I think I was a little more stubborn than most people would be, so I just attributed it to dehydration and tried to treat myself by drinking Pediatyte. I woke up at 4:00 am one morning and was unable to move. I started vomiting and Glenn called the doctor on call. He instructed us to go straight to the emergency room at Carolinas Medical Center, where my pulmonologist Dr. Dan Howard works. Glenn had to carry me to the car, and I was so sick that we both thought I wouldn't make it to the hospital in time. When I arrived, my blood pressure was only 70/40. They rushed me in and started running tests. I was diagnosed with toxic hepatitis, caused by the medications I had been taking. I was told that it would take about two weeks for my body to get over it. During that time my weight plummeted to a mere 87 lbs.

I was placed in an isolation room in the hospital, where any visitors had to wear a gown and mask before entering, because they were still unsure whether or not I had TB. After being in the hospital several days, Dr. Howard walked in the room without wearing a mask. He informs Glenn and me that the results are back and I don't have TB. He then explains that I have another mycobacterium, and even though it is not contagious like TB, it is very severe and very hard to treat. I remember him making the statement that TB would have been better. The mycobacterium that I had was not a common one, so Dr. Howard did a lot of research to figure out the best treatment plan. I was placed on an IV antibiotic that I had to use twice a day and an oral antibiotic. They put a port in since I would be receiving long term antibiotics.

Over the next several months, I gained some of my weight back, but my lung function began to fall pretty rapidly. Even though I was being treated for this mycobacterium, it was still affecting my lungs and doing permanent damage. The usual treatment for a mycobacterium is 12 to 18 months. After being treated for one year, Dr. Howard took me off of the antibiotics. Glenn and I were ecstatic. I felt "free" for the first time in a year, so we decided to take a vacation to Maine. It was somewhere that I had dreamed of going since I was a child. When we returned home, I started running a fever again. Dr. Howard informed me that the mycobacterium had come back and I once again had to be placed on IV antibiotics. He also said that we needed to consider evaluation for a lung transplant. It was something that I knew one day would come, but deep down I had hoped I could beat this disease and not have to consider a transplant, at least not at this age.

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