fondreflections
New member
Well, I think I might finally be getting somewhere. Since June, my CF doctor has been quick to announce that my CF might be advancing slightly; however, I refuse to swallow it without hesitation.
I explained to him that I seem to be getting SOB (short of breath) much more often but only with exertion. For example:
1.) I am running/walking 25 minutes/ 3-4 days per week. Well, the first 10 minutes are brutal. It feels like I lose the bottom half of my lungs. I can't seem to take deep breaths no matter how hard I try.
2.) I'll feel fine until I lift maybe a 30 pound box or something. I'll carry it up the steps and again get so SOB like my airways are suddenly 'lost'.
Those are the two examples that come right off the top of my head. My small airways are at about 30% so yes, they are nearly gone. My FEV1 dropped from 68% to 64% this year. It was at 68% for the past 3 years straight. However, I go from fine to SOB in a matter of minutes or seconds. I MUST do a treatment BEFORE I run/walk or else I could die...I even coughed up a little blood the one time when I didn't do my treatment beforehand. I was so SOB, and my lungs weren't 'right' for 3 days afterwards accomplied by fevers. Since that episode, I make sure to exercise post treatments.
Anyway, I'm thinking that perhaps Advair would be something I should try. I know a few of you suggested it before, and I think that's something that I should start. Is there anything else that any of you can think of in regards to treating asthma?
I was thinking of calling my CF doctor Monday and enforcing the idea of trying something new. He'll do pretty much whatever I want because he knows I only bother him when I know something is amiss. I am the one who usually calls the shots. He follows.
Something is just off. I can't shake it...
My current breathing meds are minimal - Albuterol, Hypertonic Saline, and Pulmozyme. Yes, that's it. I also do the Vest, but I don't consider that a med just chest therapy. I culture MRSA and PA too, if that helps.
I explained to him that I seem to be getting SOB (short of breath) much more often but only with exertion. For example:
1.) I am running/walking 25 minutes/ 3-4 days per week. Well, the first 10 minutes are brutal. It feels like I lose the bottom half of my lungs. I can't seem to take deep breaths no matter how hard I try.
2.) I'll feel fine until I lift maybe a 30 pound box or something. I'll carry it up the steps and again get so SOB like my airways are suddenly 'lost'.
Those are the two examples that come right off the top of my head. My small airways are at about 30% so yes, they are nearly gone. My FEV1 dropped from 68% to 64% this year. It was at 68% for the past 3 years straight. However, I go from fine to SOB in a matter of minutes or seconds. I MUST do a treatment BEFORE I run/walk or else I could die...I even coughed up a little blood the one time when I didn't do my treatment beforehand. I was so SOB, and my lungs weren't 'right' for 3 days afterwards accomplied by fevers. Since that episode, I make sure to exercise post treatments.
Anyway, I'm thinking that perhaps Advair would be something I should try. I know a few of you suggested it before, and I think that's something that I should start. Is there anything else that any of you can think of in regards to treating asthma?
I was thinking of calling my CF doctor Monday and enforcing the idea of trying something new. He'll do pretty much whatever I want because he knows I only bother him when I know something is amiss. I am the one who usually calls the shots. He follows.
Something is just off. I can't shake it...
My current breathing meds are minimal - Albuterol, Hypertonic Saline, and Pulmozyme. Yes, that's it. I also do the Vest, but I don't consider that a med just chest therapy. I culture MRSA and PA too, if that helps.