Kathy’s page is dedicated to all IPF patients and their families coping with this disease. Kathy will be writing about her story to inspire us and motivate all of us to keep working hard to find a cure. It has been a long journey for Kathy and a true honor to have her contribute to Wescoe Foundation for Pulmonary Fibrosis and the IPF community!
Kathy was my piano teacher and ironically, coped with IPF and all of its trails and tribulations. Kathy had a double lung transplant in March 2012 and made it a mission to attend our Wescoe Walk on October 24, 2013. It was moving and incredibly comforting to know that Kathy is doing well and thriving with her new lungs.
Here is Kathy’s story:
In the fall of 2006, my husband Jim and I were in Germany to visit family and we all went to tour Castle Neuschwanstein. To get to the castle, we first travelled up the mountain by a horse drawn carriage. When we reached the point where the horses could go no higher, we needed to get out and keep moving up the hill by foot. I was having tremendous difficulty and was kicking myself for being what I thought was “out of shape.” I was doubled over when I reached the top trying unsuccessfully to get my breath, as I began for the first time, thinking something was very wrong. Jim and I never toured the castle… I was unable to do it.
After we arrived home, because my breathing seemed better, I began to think that maybe I was wrong in my thinking. In a couple of weeks, it happened again and I realized that exertion was really giving me breathing problems. So I began searching on the computer and as I searched, I got very scared, but avoided making an appointment with a pulmonologist. This was mostly because I was afraid of what they were going to say. I finally went and I had some tests and tried to do the 6 minute walk (could not complete it) and heard the words “Pulmonary Fibrosis” and Oxygen for the first time. It was April of 2007. I was devastated because I knew at that point what PF was and the prognosis for the disease. Calling Jim at work and later telling our three sons was one of the most difficult things I had ever done. Things were not too bad at first…..I hated the ogygen and the changes that it brought about to our lives, both physically and emotionally. Although the oxygen was difficult, doing things was much easier for me because of it. After about 6 months I was moving from 2LPM to 4LPM and Jim and I decided to look further and we went for a second opinion and transplant was brought up for the first time. We looked at a few hospitals and decided that if I could get in to Shands Hospital in Gainesville, Florida that this would be best for me. Shands accepted me as a patient and the next few months were spent with appointments and enrollment in Pulmonary Rehab. In May of 2008 it was decided that I should begin the evaluation process for transplant, so we went for three days of testing. It was a long three weeks until 9/25/08 when the call came in telling me I was going to be listed.
The wait began and over the next 3.5 years, I had three “Dry Runs” and my PF progressed, bringing its own limitations with it. Eventually, It was clear to our family that this was getting really bad….. It finally reached the point where my oxygen needs reached 32 lpm and I spent my time either in bed or in a recliner and needed a scooter even to go to the bathroom. I was simply very tired, and had a few panic attacks and had lost a tremendous amount of weight and in the beginning of March 2012, we called in Hospice. We knew the end was near and it seemed that the transplant wasn’t going to happen. Hospice came, they were wonderful at our meeting and answered many of our questions. When they left, waiting for a call with our answer, I was ready to sign with them, knowing that doing so would remove me from the UNOS list. I was so very tired and resigned to what was to come. Jim looked at me the next day and said that we were not going to sign with Hospice, that we were not going to give up and called Hospice to thank them but we would decline. The call from Shands came in a few days later and I received a Double Lung Transplant on 3/9/12. After the surgery the Doctor told Jim that I had less than a week of life left without the surgery.
Since then, there have been several ups and some downs. Since my transplant, I have been hospitalized 4 times, but none in this past year. Being in the hospital in Florida, the day of our son’s wedding in Georgia was not what we had planned, but I was in rejection and receiving the magic “rabbit serum”. In order to maximize your chance for health you must diligently follow the many rules of Post Transplant Life. For me, all of this is just fine and part of respecting my Donor and helping my team at Shands to keep me healthy. One of the biggest lessons Jim and I have learned since my transplant is that life needs to be flexible, and this gift I have received is not something we can say “thank you” for. What my Donor’s family gave to me was the “Gift of Life” and every morning I wake up with a prayer for her knowing how blessed I am. I know that the only reason I am here is because of the Good Lord above, my Donor and her family, my surgeon, my team at Shands (who work hard to keep me going), my Jim and family and friends and the thoughts and prayers of so many.
The past almost three years have been filled with so much… family times, watching our three grandchildren as they grow, time for just Jim and I – trying to help other people who are at Shands because of a lung disease, and doing what we can to promote others becoming donors. Last October, My family and I participated in Jennifer Wescoe’s walk for her Dad and for Pulmonary Fibrosis. It was a wonderfully emotional time for all. I knew Jennifer when she a little girl… my family and I later moved from Coopersburg to Rhode Island and we lost touch. After my Pulmonary Fibrosis diagnosis, I spent a lot of time on the computer researching and learning. One day I found the Pulmonary Fibrosis Foundation and found a connection with her again… sadly because she had lost her Dad to this disease.
Pulmonary Fibrosis is a devastating disease and more research is needed to find other ways to conquer this disease.