Biography

I was diagnosed with IPF a year and  1/2 ago by an expert team at National Jewish Health in Denver after having no success for almost a full year prior with doctors from NC to NM. As my condition worsened, I felt like I would die before Christmas 2021. I had a terrible cough that was so bad I could no longer hold a conversation, I was lightheaded and weak all the time, and I could never catch my breath. It was May 2021 and we were still in Covid protocols and we had just moved to NM and quickly learned that the medical care here was horrible. I was only able to see a pulmonologist via teleconference and it took me 7 months to get that appointment. Meanwhile I was getting worse. This doctor put me on masses doses of steroids but then left me on my own with no follow up. A friend from CO told me to call National Jewish, where I was seen within three weeks and was given a full week of tests and evaluations. I was immediately put on oxygen and given the IPF diagnosis. I was told told I had only 50% lung capacity and was put on Ofev to help slow the fibrosis and methophenolate to reduce inflammation around the lungs. They also found I had an esophageal problem that was adding to the lung problem. It took the doctors at NJH six months to get me off of the massive amounts of steroids I had been put on so they could finally get accurate test results. I am feeling better and go to pulmonary rehab 3x a week now, but my life has changed dramatically; I still have very little energy, I can’t walk more than minimally around my house, I use a mobility scooter to get around, we can’t travel unless we go by car because my oxygen needs are so high I cannot be accommodated by the airlines. I had to give up my beloved hobby of motorcycle riding, something my husband and I took up in 2007 and had been traveling the country together. Since I have no immune system I can’t go to large gatherings or events and I (and my husband) still wear masks everywhere we go. But I am still alive and although the side effects of the drugs are nasty, I am feeling better than I have in two years. Because of my age (67) and my esophagus problem and my weight (I would need to lose another 35 pounds, I have already lost 30) I will probably never be eligible for a lung transplant. But the doctors tell me I may be able to stay stable for a good while. I see my team at NJH every six months now, and they were able to get me into a team of doctors in NM to follow me between my visits up to Denver.. In the meantime I am hopeful for other therapies or treatments that may prove successful.