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Reaching goals through Xtreme Hike
Sara Kominsky
Sara Kominsky
There is currently no cure for cystic fibrosis and too many people with CF die at a young age. I have come very close to being part of that statistic.
I was born in 1971, during a time when CF was barely considered treatable. Diagnosed at three months, I would have a childhood filled with hospitalizations, surgeries, home IV's, manual chest PT -- and countless pills.
I was blessed and lucky enough to have one of the best CF specialists in the country, dedicated parents, and excellent health insurance. I was able to undergo a risky experimental treatment which changed the course of my life. Despite the odds, I not only survived, but thrived.
After graduating from Mount Holyoke College, I received advanced degrees from Purdue University and the University of Rochester's School of Medicine. I also earned my EMT certification. The flip side was developing GERD, CF-related diabetes, gout, and slowly decreasing lung function.
In 1996 I married my high school sweetheart, Dan, and in 2002 and 2005 we grew our family via adoption of our two daughters. Unfortunately, I started to have more frequent exacerbations and every time it was a little bit harder to recover and I would lose precious lung function.
In 2015, my pulmonary health precipitously declined and I had my first double lung transplant at Duke in 2017. The life-saving surgery was followed by a multitude of infections, acute rejections, sepsis, and finally untreatable chronic rejection. In 2020 I received a second double lung transplant, or BOLT (Bilateral Orthopedic Lung Transplant), also at Duke.
I have been doing well since my second transplant, albeit the "usual" bumps associated with a BOLT. This has included lung masses, multiple pulmonary embolisms, resurgence of both Cytomegalo and Epstein-Barr viruses, infection with a variety of bacteria, several episodes of acute rejection, fundoplication surgery, gastroparesis, hemolytic anemia, cataracts, chronic kidney disease, a variety of skin cancers, and severe osteoporosis leading to fractures.
The daily minutia - neuralgia, headaches, nausea, vomiting, extremity swelling, acid reflux, high blood pressure, severe muscle cramping, fevers - are also part of the package.
My CF and transplant journey hasn't been a cakewalk, but I exercise for 3-4 hours per day to keep my body as strong and fit as possible to withstand the complications. My love of nature and hiking has helped immensely.
A retransplant, on average, lasts about 2.5 years. I am five years out, as of March 12, 2025. It feels like a real milestone. To celebrate, I have signed up for the Virginia 2025 Xtreme Hike, an event I completed several years ago.
By supporting the CF Foundation I hope the following generations of CFers can stay healthy enough to live more comfortable, full lives, and avoid the complications of lung transplantation altogether.
By donating to Team BOLT, you are helping to advance CF research and science needed to drive our shared dream forward – better treatments for everyone with CF and eventually, a cure.
I was born in 1971, during a time when CF was barely considered treatable. Diagnosed at three months, I would have a childhood filled with hospitalizations, surgeries, home IV's, manual chest PT -- and countless pills.
I was blessed and lucky enough to have one of the best CF specialists in the country, dedicated parents, and excellent health insurance. I was able to undergo a risky experimental treatment which changed the course of my life. Despite the odds, I not only survived, but thrived.
After graduating from Mount Holyoke College, I received advanced degrees from Purdue University and the University of Rochester's School of Medicine. I also earned my EMT certification. The flip side was developing GERD, CF-related diabetes, gout, and slowly decreasing lung function.
In 1996 I married my high school sweetheart, Dan, and in 2002 and 2005 we grew our family via adoption of our two daughters. Unfortunately, I started to have more frequent exacerbations and every time it was a little bit harder to recover and I would lose precious lung function.
In 2015, my pulmonary health precipitously declined and I had my first double lung transplant at Duke in 2017. The life-saving surgery was followed by a multitude of infections, acute rejections, sepsis, and finally untreatable chronic rejection. In 2020 I received a second double lung transplant, or BOLT (Bilateral Orthopedic Lung Transplant), also at Duke.
I have been doing well since my second transplant, albeit the "usual" bumps associated with a BOLT. This has included lung masses, multiple pulmonary embolisms, resurgence of both Cytomegalo and Epstein-Barr viruses, infection with a variety of bacteria, several episodes of acute rejection, fundoplication surgery, gastroparesis, hemolytic anemia, cataracts, chronic kidney disease, a variety of skin cancers, and severe osteoporosis leading to fractures.
The daily minutia - neuralgia, headaches, nausea, vomiting, extremity swelling, acid reflux, high blood pressure, severe muscle cramping, fevers - are also part of the package.
My CF and transplant journey hasn't been a cakewalk, but I exercise for 3-4 hours per day to keep my body as strong and fit as possible to withstand the complications. My love of nature and hiking has helped immensely.
A retransplant, on average, lasts about 2.5 years. I am five years out, as of March 12, 2025. It feels like a real milestone. To celebrate, I have signed up for the Virginia 2025 Xtreme Hike, an event I completed several years ago.
By supporting the CF Foundation I hope the following generations of CFers can stay healthy enough to live more comfortable, full lives, and avoid the complications of lung transplantation altogether.
By donating to Team BOLT, you are helping to advance CF research and science needed to drive our shared dream forward – better treatments for everyone with CF and eventually, a cure.
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