Here’s another of my promised updates on my battle with pulmonary fibrosis. Now back in Boston (see below), I just had my first CT scan in a couple of years, and the new images show that my interstitial lung disease has progressed more or less the way my pulmonologists expected. This is a lot like, Sorry to report, but we’re continuing to spiral in toward the black hole. Still, according to my pulmo, she’s seen worse. My need for supplemental oxygen has doubled in the same time frame, which is not great news, either. I have a “new” 10L oxygen concentrator here at home now, as well as the actually new one I got in Puerto Rico. This thing is loud! It might be saving my life for now, but it’s killing my hearing and threatening my daughter with migraines at the same time. Looks a little like Robbie the Robot.
The new drug that promises to stop the progression of this damnable disease has just completed dual trials, with favorable results (according to my doc, who keeps her ear to the rails). There’s hope that it could be approved for use before too long. But that’s only if the Musk/Trump wrecking ball currently demolishing our government doesn’t disrupt the FDA’s drug approval process. (Bets, anyone?) That aside, in April, when I come back from Puerto Rico for the second time, I’ll be looking to get listed as a lung transplant candidate.
That’s all kind of a downer, isn’t it? Let’s see if I can end this on a more positive note: I have a whole lot of people praying for me. And I can still do all the push-ups and squats and lunges and weight-lifts I was doing before. I just need a little extra push in the atmo department. And ear muffs. What’s that? (Cupping hand to ear.) No, I can hear you just fine! It’s just… can you stop mumbling and speak up a little?
Upon arriving home from the tropics, this was the scene that greeted me. Brrrr.
Huggybear
Keeping active is your best bet! Keep it up! We need your imagination and your talents!