I heard from Marty yesterday. He is the only other person I knew with Hypersensitivity Pneumonitis when we met years ago at the first ILD Support Group. A couple months ago, he flew to Hawaii, something happened that is still unclear and he has needed 24/7 supplemental oxygen since.
He is frustrated. At first, we thought he might have had a clot from the flight, then an infection then, well, then no one really knew what happened. A new doctor recently took over his case, ran him through 30 blood tests, X-ray, bronchoscopy, PFT and CT Scan. The results? Nothing new but it was clear that there was no infection. What does the doctor think caused this massive downturn? A recent exposure of something kicking in the HP response. He had been weaned from prednisone and Cellcept and is now back on both. His beginning dosage of prednisone is 80 mgs along with 3,000 mgs of Cellcept. Yikes. If that can't get a response, nothing will! As a side note, the new doctor also wanted him to have another lung biopsy! Imagine! He declined.
I see my lung goddess, Dr. K. next Wednesday and am facing my own downturn. I have a feeling I will also be ramping up on my prednisone dosage. Marty is struggling emotionally as this is his first huge downturn and maybe a new normal. My last downturn was hard for me emotionally. With this one, I realize it is all just part of the process. Horrifying as that sounds, the ups and downs are to be expected. I'm not taking it personally anymore.
So, I encouraged Marty to be religious about pulmonary rehab while going through this downturn. Emotionally, it will make him feel that he is DOING something.
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