I turned 71 the other day. A year and a half ago I would have considered that an accomplishment. It turns out I have a thing called Idiopathic Pulmonary Fibrosis (IPF), a relatively rare disease that’s characterised by alveoli scarring to the point they can’t oxygenate blood. It’s progressive, so things get worse over time, and there’s no cure. When I was first diagnosed in May 2016 my pulmonologist gave me a maximum of five years. That’s the bad stuff.
In reality I’m doing OK. My only issue occcurs when I exert myself a little, my muscles, particularly my legs, feel weak because they aren’t receiving oxygenated blood from alveoli in my lungs. Sitting in my chair writing this my oxygen saturation is at 99%, almost perfect. When I’m on the treadmill I drop to the low-80s, which for a variety of reasons, is not good. Supplemental oxygen is the solution. So now when I do treadmill I’m sucking on three-litres of continuous O2 per minute.
I have oxygen units that meet my current needs. I can go to the gym, play golf, exert myself at home, or get on an airplane. And while there is no cure, there are options. I’m currently involved with two separate hospitals that are very good at performing lung transplants, Indiana University (IU) in Indianapolis and the Cleveland Clinic in Cleveland, Ohio. Both have sterling reputations. I’ve had initial evaluations at each and have appointments for continued testing and monitoring. My current status is I’m too healthy for transplant, but both are keeping a watchful eye. At this point I don’t need to make any choices. When the time comes, whichever hospital offers the first lung(s) is where I’ll go. I now know people who have had transplants at both and they are doing well.
So this is why I haven’t posted anything in a long time. IPF has been ever-present in my conscious thoughts. I’ve wanted to write but didn’t feel I was in a place where I could until now. In the future I’ll get back to posting whatever I happen to be thinking about and photographs, pretty much what I was doing before. I’ll try to only mention IPF when something happens that warrants reporting. Otherwise, I’ll try not to bore you.