[Jlajeunesse]

I had a bout of pneumonia in early November of 2019, I had experienced bouts with bronchitis many (30+) years, and I thought I could medicate myself out of this particular ailment. At my wife’s insistence I went to a walk in Albany Medical Center medical clinic. The young lady doctor diagnosed me with pneumonia, prescribed medications, and suggested that I follow up with my general practitioner. I didn’t have a chest X-ray as my visit was on a weekend and I was very tired and figured things would improve with the medications prescribed. I had a follow up appointment scheduled with my general practitioner and fortunately another medical suite in that same building had an X-ray/imaging practice. I had a chest X-ray and my general practitioner contacted me two days later and informed me that he did not see, at that juncture, any evidence of pneumonia. However he was very concerned about the amount of scar tissue shown in lungs via my chest X-ray. My general practitioner referred me to a pulmonary group I had utilized in the past. I visited the pulmonologist in mid December 2019 and they scheduled sleep studies, blood tests, and a CT Scan. I was initially diagnosed with ILD in late January of 2020. I had two breathing function tests about 7 weeks apart, the first test in February 2020, after the second test I had a virtual appointment with my pulmonologist and I had several questions about my illness which was now defined as IPF. I asked about longevity and shared my fears about the Dr Google information I had found. My pulmonologist informed me that I probably had a lot more life left and I shouldn’t be so concerned. As my wife and I talked with him he started to review my latest breathing function test and his face changed and seemed almost panicked. He informed me that my lung function had dropped by @ 26% and he wanted me to start taking a medication called Esbriet as soon as possible. It took seven more weeks before I started Esbriet in July of 2020. I’m tolerating the Esbriet medication very well and my team and I believe it has slowed my IPF. I never had a lung biopsy as the Covid pandemic was raging and medical resources were being stretched to their limit. Almost immediately after my diagnosis I had found Noah Greenspan’s Ultimate Pulmonary Wellness book and read it and joined several IPF support groups. I did this research and data mining of my own volition. I’ve made my pulmonologist aware of my involvement with theses groups and it was like “Oh good for you”…

(Folks always remember you are your own best advocate!)

I’m still on Esbriet, I went on the generic Pirfenidone a few months ago. Up until three months ago I was on 2 liters of oxygen and refillable D tanks but, I requested a six minute walk test and I have declined over the last two years. (I’m not declining anywhere as quickly as I was at first, the Esbriet/Pirfenidone seems to work well for me.) I’m sure I would’ve expired in the fall or winter of 2020 without these medications. As of right now I’m on oxygen 24/7, 7 to 8 liters of walking around and 4 liters at rest. I’m using E tanks, I get twelve tanks every two weeks. I’m limiting my journeys and staying close to home and my 10 liter concentrator.