In 2013, I was diagnosed with a disease that has no determined cause or cure. My doctors told me that my lungs would deteriorate but they couldn’t predict at what rate. I was instructed to get my affairs in order and enjoy the rest of my very-limited life.
That’s when I found out I had idiopathic pulmonary fibrosis. Both my brother and I live with this progressive, terminal illness, yet most people have never heard of it. I am not in denial about my disease—it will eventually take my life. But I am defiant—I will not let IPF rob me of what life I do have left.
Research has played a big part in extending my life, along with compassion and commitment from my wife of 48 years. I am on one of the two medications that were approved by the FDA in 2014, and it seems to be slowing down the scarring in my lungs. I try to avoid infections and use supplemental oxygen at night and as necessary for exercise, but I remain actively engaged in living. Since my diagnosis, I’ve traveled to East Africa, Bali, Vietnam and Cambodia, and we even lived on a Honduran island for parts of three winters. I can still experience the immense peace and beauty of snorkeling on the coral reef if I am very careful with my activity and breathing.
Having a rare disease can be frustrating. I’d like people to know that pulmonary fibrosis exists. I’d like them to know that sometimes it is caused by other diseases or radiation or medications, but that most often the cause is unknown. I’d like them to know it is completely different from lung cancer and COPD. I’d like them to know it affects more than one hundred thousand of their fellow citizens and that a relatively small investment in research could potentially provide huge personal rewards.