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  • Marisa, good to hear the cellcept is doing its job, and reducing the prednisone should help you lose the weight you need to lose. Walking in the heat is hard; I have the same problem here where I live, but I am in the process of convincing myself to get up earlier and walk in the cool mornings. Though certainly awake early, getting up is another story! In the meantime, though, I have started pulmonary rehab which is meant to help build up body strength; check to see if you can get into such a program. I think they are offered at every hospital? Good luck.

  • Hi Marissa, sorry to hear what all is going on with you. I have gone through pretty much the same testing since when diagnosed with CTD-ILD from polymyositis back in 2015. Although, my pulmonary fibrosis started several years before the polymyositis hit me. At any rate, I don’t know all my levels, but I’m on oxygen 24/7 at 4 lpm rest and 6 lpm when active, and just went on oxygen in February after a bout of double pneumonia. I use a concentrator (the airplane, I call it, because it’s noisy), a POC to drive since I’m just sitting, and etanks to go out and about, which is a major, major pain but necessary if I want to get out. I take 2000 mg of cellcept w/o problems. And my docs tell me I am in great condition except for my lungs. I have been on a lung transplant list since last November. Unfortunately, I have a high number of antibodies which makes finding a donor harder, but I am in the process of trying to multi-list at another transplant hospital to expand my field since my time for a transplant is narrowing (here the one I’m with stops transplanting at 75). I am 73, and I still work too; I teach community college courses online, which, like you, has worked out great since I have gone on oxygen. I have to say that I have found this whole experience so far to be a hard, hard road to follow, but since I have no choice, I try to stay active, go out with friends (despite the tanks), and wait for the call for the transplant. It’s the “new normal,” as I was told. So, that’s me w/many similarities to you. You are definitely not alone. Good luck to you in all your testing; I hope it all goes well. Anita

  • John,  a couple of questions: what is a laser treatment for your lungs?  And is that to lower inflammation? How does it do that? Thanks.