The above movie is coming out in March. It is about two people with CF who fall in love. The meaning behind the name of the movie is a play on what the recommendation is from the CF Foundation about staying 6 feet apart if two CF patients are together. Continue reading
I finished 3 weeks of IVs earlier this week. I do feel better than I did BUT I’m still having coughing attacks. I’m attributing it more to asthma though. I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being. I’m going to hold off and see if treatments and such can help. We all know how much I love prednisone, NOT! My lung functions were the same at FEV1 .96L/34%. My first two attempts were 33% and my last one was the 34%. I will follow-up in 6 weeks. Continue reading
When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs. Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs. With my line of drugs that don’t work I’m limited. Well I had to call them back because my cough and wheeze were still hanging around. I asked only for a short burst of prednisone hoping it would help. You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased. I went for lung functions and they were down a little (FEV1 34%/.98L). When compared to my last set of lung functions they are down 4%. Continue reading
“How are you feeling?” is a common question asked to me and much more so when I’m actively sick (if you know what I mean). Let me take a moment to answer that for you now. Continue reading
