I was diagnosed with diffuse scleroderma in October of 1997. I am now forty-one years old, and married with four wonderful children. I was always in great shape. I was a scholarship linebacker for the University of Texas back in the Earl Campbell days.
Since then, I have taken a great deal of pride in my physical shape and abilities. I was very in tune with my body. In July of 1997, I enrolled in a martial arts class. I felt I was losing some flexibility, and I thought the stretching would help. Little did I know the tightness and loss in my range of motion was due to scleroderma, not just age.
My next symptom was shortness of breath. I was lucky in that I was properly diagnosed quickly. Lung x-rays showed fibrosis, and pulmonary function tests (PFTs) showed a severe reduction in lung capacity and oxygen diffusion. Things started to go downhill from there.
In May of 2000, my doctor informed me that my condition was severe, and that a lung transplant might be my only option for survival. I was not ready to deal with that. I considered the options and asked Dr. Frank C. Arnett to make the necessary arrangements to see if I was a candidate for a transplant.
I was evaluated by a great team of transplant specialists at Methodist Hospital in Houston and was approved for the operation. The call came just fifteen days after I was listed on the transplant network. What a miracle! July 25, 2000, is a day I will never forget. I was eating dinner at six-thirty and on the operating table by eight-thirty. My new lung was in San Antonio; I was in Houston.
I prayed and they put me under. I awoke and was sore as heck, but I could feel the new lung working! I stayed in the hospital for twenty-eight days, and I am pleased to say, I am making excellent progress. I have to take a lot of drugs, but I can ride my bike and take walks with my family. I am truly blessed.
Scleroderma has not attacked my new lung, and I am hopeful that it will remain unaffected. My heartfelt thanks go out to all the doctors and staff members who have helped put my life back together. I have been told that transplants are not very common for scleroderma patients, but consult your doctor concerning this matter. I do not know how long my new lease on life will last, but I do know that we are making progress toward solving the mystery of scleroderma.
Make the most of every day. Each day is a chance to do something for which you can be proud. Keep up the good fight!
Email: [email protected]
Story posted 2-1-01
Story Edited 7-30-03 JTD/V1
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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