Before I started the magicbluepill I often read blogs by people on Kalydeco and I was interested in reading about what treatments they needed. I read about people who stopped needing treatments, and wondered if this could happen to me?
Realistically I was not expecting to need no treatment, and as I work as a physiotherapist I would not feel safe doing this. I have noticed that the effect of doing no nebs/physio is not that great now, previously I could become sick and my pfts could drop if I missed treatments. Interestingly right now if I do not do any treatment I barely cough, but with treatment I cough slightly. The treatment helps me to clear very thin, yellow sputum.
Since I started Bronchitol I have stopped Hypertonic Saline. I found the Hypertonic Saline was aggravating my throat (dry irritated cough), and basically wasn’t needed along with both Bronchitol and Pulmozyme. This has meant I have not done PEP recently as I always did PEP connected to the nebuliser with Hypertonic Saline. My lung function has been stable even though I have not been doing any chest physiotherapy for almost 3 months. Just in case my physio is reading this and gasping in disbelief- I will start physio as soon as I notice any changes!
I have now been taking Bronchitol and Pulmozyme for over a month since I got back from China, and the combination seems to be working really well. Bronchitol and Pulmozyme keep my lung function at about 70%, without these I am around 65-67%. I am now getting in to a better routine, this took a bit of adjusting as I have been much busier with uni this year. Both Pulmozyme and Bronchitol help me clear sputum each day, and I’ve started to notice that Bronchitol is possibly helping me to clear more. I have always been a big fan of Pulmozyme as it has worked well for me, so I am surprised that perhaps Bronchitol is now helping more…
So right now my medications consist of Kalydeco, Creon Forte, Azithromycin, Abdeck (vitamin), Ranitidine (reflux, this is much better and I now do not need surgery for this), Pulmozyme and Bronchitol (once a day instead of twice a day- as I am on Kalydeco the second dose doesn’t seem to make much difference). Since I have been on Kalydeco I also have not needed any inhaled or intravenous antibiotics, which is a 15 year record for me!