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Tim was diagnosed in June of 2005 with end stage pulmonary fibrosis. This was the first time that the word “pulmonary fibrosis” was ever mentioned to us. It was the same day of the diagnosis that the doctor indicated that Tim’s only hope for survival would be a lung transplant. Still in a daze for several days, remembering that the doctor said that without a lung transplant, Tim’s survival time could possibly be less than a year, we started seeking out transplant centers that were close to us in Tulsa. There were no hospitals in Oklahoma that were accredited to perform such a transplant. Through very careful research, it was decided that Barnes Jewish Hospital in St. Louis would be our choice of hospitals. After the initial medical evaluation in St. Louis, he was approved for a lung transplant (or should I say “bi-lateral lung transplant). One of the major stipulations was that he had to move to St. Louis to await the stay because there was only a “two hour” window of opportunity once you received the call that a donor was located and your wait was over. Tim moved to St. Louis in February of 2006 and received his bi-lateral lung transplant July 5, 2006. After the required three month stay for recovery afterwards, he came home to Tulsa. He was doing beautifully, felt better than he had in years, and was able to go back to work and maintain a great quality of life.
In July of 2007, Tim’s new lungs started rejecting at an alarming rate. His pulmonary function rates started plummeting and was called to St. Louis to take a week long thymoglobin treatment in hopes that the rejection would cease, but it was not successful. He was then put on photopheresis (a new treatment to stabilize organ rejection – as for the lung, this treatment is considered as experimental as it has not been approved by the FDA yet) in hopes that it would stabilize his rejection. It has been very successful (better than the average) in this stabilization process. Tim’s current pulmonary function numbers are very, very low and he has been accepted on the lung re-transplant list. The transplant is his only hope of a longer survival period and to have a better quality of life (he is on oxygen and had to quit work again in October of 2007). Because of the rejection of his first set of lungs, the criteria for the donor’s lungs has to match perfectly. There are antibody issues that have developed in his body that make the chances of receiving lungs only about 5%, possibly less. We remain very positive that the 5% chance will happen. The doctors know that there is a scarcity of lungs that will match, so they have agreed to allow Tim to stay in Tulsa until there is a donor match, under the stipulation that we have an air-ambulance to transport Tim to St. Louis within the two hour time frame. We are currently waiting for a donor and trying to live our lives the best that we can and pray that one day we receive a call that they have harvested the “perfect match”.
-Tim & Rene Belford