I come from a family scarred by IPF. I'm a nurse practitioner, who noticed clubbing of the fingers, when my dad, a lifelong smoker, was struggling to breath. I assumed he had COPD, but his doctor told him it was IPF. He died in 1998.
Then my brother, David, was diagnosed. He died three months post lung transplant, in 2013. Our brother Doug and I were his care givers. He was in ICU the last month of his life, unconscious. Doug and I had to make the heartbreaking decision to take him off life support. His new lungs were great, but his liver didn't handle the stress of the surgery.
I was seeing a cardiologist for a heart murmur, and noticed increasing shortness of breath. He referred me to a cardiac surgeon, and in 2014 I had open heart surgery. When, five months after surgery, the SOB returned, worse than before I thought my surgery had failed. I never suspected IPF...but my smart PCP did. She ordered testing, and I was told I had IPF. I couldn't believe it. I never smoked, I ate a healthy diet, I exercised, and I even flossed my teeth. I did everything right...it can't be so! I was devastated but it was to be my fate.
My daughter, a physician at Cleveland Clinic got me an appointment within a week. I was encouraged that there was hope, with the medications, recently FDA approved, and I knew I had to get out of my funk and take control. I started on Esbriet and got into pulmonary rehab...and after a few months I started to feel better (fibrosis is permanent, so it didn't go away), then I started swimming daily.
I've been doing this since 2015. I compete as a masters swimmer, and in 2017, I placed second in the 50-yard butterfly at the National Senior Games. From not being able to walk 20 steps without sitting down in 2015, to placing at a national swim meet in 2017, took a lot of work, and was exhilarating. I have three surviving siblings, who all got high resolution CT scans, after my diagnosis. Doug, fellow caregiver, was positive for early IPF. I worry for my children, and grandchildren, but am hoping that, before this disease can strike them, there will be a cure. Meanwhile, I'll keep swimming, and be thankful for every day, and every breath.