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Thank you for your reply. The days that I feel so weak I do nothing literally but lay on the couch with my oxygen. My sputum is clear so I guess there's no infection, and I nebulize every day. I called my pulmonologist and talked to the nurse so that she could send a message to the doctor and I heard nothing back. I live in a rural area where pulmonologist are obviously overwhelmed. I do have a portable oxygen concentrator that I can carry with a strap over my shoulder to Denver. I am hoping that NJH prescribes the new drug brensocatib as it is due to be approved by FDA Aug 12 I believe. Either that or I get accepted to the phase III airtivity clinical trial. I continue to do everything I can to eat protein, fruits, and vegetables every day. Three months ago I used no oxygen, was walking 2 1/4 mile twice a week, riding my recumbent bike twice a week and doing floor exercises twice a week. I now am on oxygen and it takes all that I have just to walk that 2 1/4 mile once every two weeks - it just feels like a rapid decline. I'm shocked literally at this turn of events.

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Replies to "Thank you for your reply. The days that I feel so weak I do nothing literally..."

I suppose they must have tested your blood gases? Could you have hypercapnia? It causes great fatigue.