Duke Transplant Friends

In August, 2000, I was in the hospital for one of my regular tune-ups, and Dr. Howard came in with some startling news. He told me that my sputum culture came back and showed that I had burkholderia cepacia. This is a very virulent bacteria that some CFers get. He said that it had most likely been causing my recent fevers, and that I might not be able to receive a lung transplant because of it, because the survival rates post-transplant weren't very good for those with this bacteria. I knew at that point that a lung transplant was my only hopes of survival. No one was at the hospital at the time with me, so after my doctor left me with this devastating news, I called my old pastor in Virginia and talked with him. I then asked to speak with the chaplain of the hospital. My hopes were shattered, and all I could think about was not living to see my daughter grow up. I was told that the chaplain would be up soon to see me. About 15 minutes later, a lady walks in and sits on the side of my bed. She asked me what was wrong and began reading scripture from the Bible that she had in her pocket. She then prayed with me, and I felt so much better. As soon as we were finished praying, another lady walked in and said that she was the chaplain. I had thought the lady who had just finished praying was the chaplain. She told me that she was my nurse for the night. I had never seen her before, and never saw her after that moment. I am convinced to this day that she was an angel sent to me to comfort me. The chaplain prayed with me and left. My nursing assistant for the night came in later and saw that I had been crying. She then proceeded to tell me her miracle story. She wasn't supposed to live, according to the doctors, but after a prayer chain was started in her church, she was healed, and the doctors were stunned. I was reading a book at the time called "The Power of a Praying Woman". An old
nurse of mine from another floor happened to walk by my door and saw me in the room. She came in, saw the book on my bed and began telling me about miracles that happened in her church after she and several other women came together to read that book and pray for the sick in her church. One lady, she said, was cured of brain cancer, and she hadn't been expected to live. I know that God sent all of those people to my room that night. I am convinced of that, and He gave me so much peace about the cepacia after hearing of these miracle stories. My doctor had told me that once you get cepacia, it doesn't go away. Much to the doctor's surprise, cepacia never showed up in my cultures again. That was a true miracle from God.

Dr. Howard then referred me to Barnes-Jewish Hospital in St. Louis to be evaluated for a transplant. At this time, we didn't know that the cepacia would never show up again, but they had agreed to evaluate me anyway. A week before my evaluation, I had to be placed on oxygen 24/7. This was really hard for all of my family, because it was kind of the point of no return. I had finally gotten to the "oxygen" stage of this disease, and there was no going back. I went to Barnes-Jewish in October, 2000 for a four day evaluation. They did diagnostic tests, I had to meet with a psychologist and I was able to meet the pulmonologist and transplant surgeon. It was a very busy four days. I was placed on the transplant waiting list after being evaluated, but was told there was a two year wait. When I came back and told Dr. Howard this, he was somewhat discouraged, because he wasn't sure whether I could wait those two years or not. He then referred me to Duke University Medical Center in Durham, NC

In March 2001, I went to Duke to be evaluated for their transplant program. I met with their transplant team, including Dr. Scott Palmer, medical director for their lung transplant team, and immediately knew that this was where I wanted to be. The normal waiting period for someone with my blood type was approximately 9 months. I was placed on the list at the end of March. They had done a lot of blood work on me at the time of evaluation, and found out that I had a large number of antibodies in my blood that made me incompatible with 96% of the population. This meant that it would be very hard to find a cadaver match for me, and that I should consider a living-related lobar transplant. In other words, they would start testing family and friends who would be willing to give up a lobe of one of their lungs. They immediately found a match with my Mom's brother Joel. All we had to do was find one more match and I could receive a transplant. About 40 family members and friends were tested. My sister Renee was a match, but after going through some testing, they found out that she had mild asthma which meant that she couldn't be a donor. We were overwhelmed at the generousity of these people who were willing to do this for me. Even more wanted to be tested, but didn't meet the requirements that were set for donors. These included being taller than me ( so the lobe would be of adequate size), being 55 or under, being in good health with no medical problems and being a close friend or relative to me (for ethical reasons).

While all of these people were being tested, I was going through treatment to try and lower the antibody level in my blood. The lower it went, the better chance I had of finding a donor in time. I had to have plasmapheresis treatments three times a week at Duke. This treatment is where they remove your blood and seperate the plasma from the whole blood to try and remove the circulating antibodies in the plasma. Each treatment lasted about two hours. I then had to get a gamma-globulin infusion which lasted another two hours. The treatment was very tiring and had to be done three times a week. I had about a two hour drive to Duke, so it took up the entire day. This was an exhausting few months for my whole family, because my Mom, my Dad and Glenn took turns driving me back and forth. The treatment lowered the antibody level some, but not like my physician had hoped. At the same time, I had to have a feeding tube placed through my abdominal wall into my stomach, because I couldn't keep my weight up. The nutritional shakes that I would put through the tube contained so much sugar and carbohydrates that I had to start taking insulin shots. I also went through sinus surgery the same month to try and decrease infection in my sinuses. Because of chronic anemia, I had to have several blood transfusions throughout the following months.

By September, only one suitable donor had been found, and Dr. Palmer knew that we needed to find a second donor quickly. My hospitalizations were so frequent at that time, that we wondered if we shouldn't just move to Durham until transplant. Since, we were running out of time, the transplant team decided that my mom should be tested. She wasn't tested before now, because she is 3" shorter than I am. She was a match. After going through all of the testing that donors have to go through, they determined that her lungs were actually large for her size. This was a blessing, because it meant that her lobe would be of adequate size.

The transplant was scheduled for Oct. 26, 2001. My mom, my uncle and I were admitted to the hospital the day before to prepare for the surgery. My mom developed a fever the night before, and after much consideration, the transplant team cancelled the surgery. They couldn't risk giving me an infection during surgery. The transplant was rescheduled for Nov. 12. We had about 24 friends and family members who drove to Duke for the "big day", so everyone was a little discouraged. My transplant coordinator, Jean Rea, came into the room after it was cancelled to help support us in this difficult time. There had been so much preparation, including securing three operating rooms beside each other, and we knew that I didn't have much longer to live. Two weeks could have meant the difference between life and death.

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