Hostess Rise'
Forum Leader
Username: Risa
Post Number: 10582
Registered: 05-2003
| | Posted on Tuesday, October 13, 2009 - 12:53 pm: | 
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I was on the verge of turning 30 in January of 1988 when I came down with a cold and found I was having trouble breathing just walking across the street. I had quit smoking three years prior to this problem. I scheduled an appointment with my preferred primary physician, Dr. Susan Schooley. She listened carefully to my description and sent me for a chest x-ray. I will never forget the look on her face when she told me: "I don't know what you have. I've never seen an x-ray like this before." She showed me the x-ray, then sat me down and did an arterial blood gas. From that moment on, for the next eight years, I was never without my oxygen tank set first at 3 liters/min, then 4 l/min and years later more than 6 liters/min, 24 hours a day.
I was hospitalized and the parade of specialists followed. Finally, it was decided that I should undergo a lobectomy to try to improve my breathing. But when the surgery was preformed, the doctors discovered that all of my lung tissue was diseased, not just the top lobes as they had initially expected. Lung tissue was sent out to labs all over the country for diagnosis. Apparently the pathology was very unusual. The consensus diagnosis came back- I had Eosinophilic Granuloma (Histiocytosis X), now known as Pulmonary Langerhans Cell Histiocytosis.
A doctor who I had never seen before walked into my room and asked me if we had discussed my lung transplant. My husband and I were stunned. This was the first suggestion that I would have to resort to such a drastic measure. We asked him to leave. I went home to recover from my surgery and put my life back together.
I asked Steve Turpin, my pulmonary doctor, for a prognosis. He told me I had two to eight years to live. I said "That is a strange prognosis, what is that based on? He said "On autopsy results." I decided I would wait as long as I could before considering a transplant- I read the papers on lung transplants and was understandably scared as long-term survival in 1988 was not the best. Things sure have changed for the better. I returned to work and started pulmonary rehabilitation on the same day. I worked 4 hours in the morning and went to rehab 4 hours in the afternoon. At the end of 4 weeks, I was working full time .My job as a laboratory research specialist was fairly active- to go from room to room using equipment I would walk about 6 miles a day. I also never broke my habit of working standing up. I worked for seven years full time while on oxygen. In April of 1992, four years after going on oxygen, I gave birth to my daughter, Sarah. She was one week early and small due to my oxygen status but perfectly healthy. My husband, Rick Merritt and I were overjoyed. We never dreamed we would be blessed with this precious life.
Two years after Sarah was born my condition started to decline. My fingernails turned blue more easily and my oxygen needs went up. Prednisone tapers helped but only for a month, then a week. I finally listed in September of 1994 for a double lung transplant. I quit work in March of 1995. On March 25, 1996 I received my lungs at Duke University Medical Center from a 20 year old male African American who had been shot. I owe him my life.
After recovery I kept a promise to my four-year-old daughter to carry her up the stairs. Prior to the transplant I could not manage that ordinary task even when she weighed only 5 pounds. What an experience to finally be able to run and play with my child! At three months out we were able to swim in the ocean together.
It has now been 6 years and counting since my transplant and life is wonderful. I am so grateful for the time I have had with my husband and my nine-year-old daughter. In 1998, I attended the U.S. Transplant Games in Ohio, swimming in the 50-yard breaststroke, backstroke and freestyle events. In 2000, I came back for a repeat performance medalling in the 100 y breaststroke.
In addition I have spent time learning another language, American Sign Language, and interpret for the deaf on a volunteer basis at church. I have also volunteered as a tutor, in the trainable mentally challenged classroom and in a pre-school for the deaf and hard of hearing Reaching my fifth year with virtually no complications convinced me it was time to prepare for a long future. I never expected to live this long and to be so healthy! I am now pursuing a master’s degree in the visually impaired training program at North Carolina Central University in teaching orientation and mobility skills to the blind and visually impaired.
I have also devoted time to spreading the message that organ donation works in the hospital, at churches, in the schools and drivers education classes through volunteer work with Carolina Donor Services and devoted time to donation awareness and lung transplant patient support through SecondWind National Lung Transplant Association, Inc and Transplant Buddies. I am currently President of the lung transplant association and have run the SecondWind support group for transplant patients and their families for the past two and a half years at Duke Center for Living.
I thank my husband for taking such good care of me, my daughter for giving me the drive to live, and my donor and his family for providing the precious gift of lungs. Last, but not least, God for giving me the faith to move forward.
Bless you all,
Kathryn
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