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The Gift of Life
Continued
From one father:
My wife and I realized for several years that TX was a possible option. Fortunately our daughter was nominated for TX just in time, as it turned out. Her initial reaction was that she was not interested in TX. We believe that part of her position came from experiencing the death of her brother with CF at the age of 21. Our son died without the option of TX. We knew it was time for our daughter, and that it was appropriate, as we observed her health and pulmonary function deteriorate.
Her decision to pursue TX came after we had returned from Christmas vacation in Hawaii, and she caught a nasty bug on the flight home. She came to realize that she was not going to regain her baseline after that infection, it had done so much damage.
As her health continued to deteriorate, it appeared that she might not last until TX. Many times, when nominated, the CF patient is shocked. They usually don’t believe that they are that sick. However, being listed as soon as one is nominated makes sense to me. Doctors generally begin this conversation when their evaluation is that the patient has only two or three years to live. Our daughter very nearly ran out of time before TX.
She was diagnosed at the age of six, and her very first hospitalization wasn’t until the age of 15. She was relatively healthy late into her twenties. Her health really began to decline in her early thirties. She required oxygen for two years before the TX. About a year before TX, she began to experience congestive heart failure. In the final month before TX, she was on the maximum flow of oxygen—15+ liters continuously. It still wasn’t enough. She was given only a few days to live if she did not get a transplant.
The surgeon told me later, after the operation, that he had never seen lungs so far gone as the ones he removed from my daughter. They literally fell apart in his hands. There was almost nothing there. He had no idea what she had been breathing with or how she had stayed alive.
The decision to pursue TX was entirely hers. We were—and are—totally behind her as was her sister and her fiancé. Since she was listed for only 8 months, the wait was not long. Generally it is from one to two years. In addition to the support of her fiancé, our role was as caregiver. She and her fiancé moved in with us until her last hospitalization, which was 45 days long. She was transplanted at the end of that last stay.
We did not feel overwhelmed, but dealt with it one day at a time. Our focus was to keep her as healthy as was possible. We are a close family and were committed to whatever we could do to help her. However, she did all the real work.
We cannot think of anything that we would have done differently. And our daughter has not changed as a person. But everything has changed for her. She now has a life, and she has since married, gone back to work, bought a home, taken vacations, and is enjoying life as she had been previously unable to do.
Before two of our three children were diagnosed with CF over thirty years ago, we knew nothing at all about CF. I believe it is important to become as informed about CF as possible. After diagnosis, we learned everything we could and became very active in dealing with this progressive disease. I think it is important to be listed for TX as soon as being nominated by a physician. One can always postpone TX when notified that an organ is available and still remain listed for another opportunity.
Our daughter has a life. That’s the biggest thing.
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