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!
Doyt Echelberger
May all the forces of the Universe, and other universes, combine and focus on channeling energy into your mind and body for your unique and specific utilization, courageous Starrigger.
Nicole Valentine
Please add me to the whole lot of people praying for you list.
Frances Giuffre
Thanks for update, Jeff. I wrote all my congress people to stop this loutish admin. And rallied at state house Wed. You have my prayers too! Fran
Virginia Compere
So glad you are in the able hands of Mass General / Brigham physicians. Please keep us informed. We will be praying for you!
Jeffrey A. Carver
Thank you all for your prayers and focused wishes to the universe! It helps, knowing.
Doyt Echelberger
At my age of 95 I vividly recall you and your brothe4r sitting on a lab desk in Huron High School wile I was offering extra credit for reading a small paperback on Soviet Science Fiction. And another day that we took a field trip to Cleveland to a science museum. I think your father came along as chaperone. One of the students reportedly smoked weed and got away with it and I became hesitant to do any more field trips. Today I am far more tolerant and there is a very successful weed dispensary in Huron. But I digress. Curious if you recall any of those early years. And then you graduated and went to Brown University, were dissatisfied and transferred. The comment box is full. More later Jeff.
Jeffrey A. Carver
I certainly remember your unorthodox method of teaching–making science FUN–and your encouragement of reading science fiction. (Which was a helpful boost to a tendency my brother and I already had.) Your memory of our university experience afterward is a little off, though. Chuck went to Baldwin Wallace College for a year, was dissatisfied, and transferred to Brown University. I followed him to Brown, and that’s where we both graduated.
Doyt Echelberger
The kid that smoked on that field trip had a last name of Jordan.
Jeffrey A. Carver
Doesn’t ring any bells. Probably someone in Chuck’s class. (He was two years ahead of me.)
Rick Archambault
Hey Jeff, sorry to hear of your recent r”tests indicating the possibility of further progression but excited to learn of the new drug that has yielded positive results! Just hang in and keep the faith. There are powers out there that can reverse things or at least mitigate them in a hurry! I know. I’ve been there!
Prayer and patience!!!