Diagnoised as an adult with rare form of cF
Hello, I am a 57-year-old woman, who was first diagnosed with a very rare form of CF. I was diagnosed at the age of 26. I then had to have a lobectomy of my lower left lung. I have bronchiectasis with the rare genetic mutation of Immotile cilla Dyskinesia. I have constant infections. I have pseudomonas that has colonized in my lung. I received meropenem in an Infusion through a port in my chest.
My treatment routine
I also inhale Gentimcin every other 28 days to maintain the growth of the bacteria. I take bronchial dilators in the form of Albuterol. sodium chloride 7%. budesonide. And Acetylcysteine for mucus thinning. I use an airway clearance system 4 times a day along with my medications.
I am not using supplemental oxygen 4 litters. I sleep with a BiPAP machine, my condition has been progressing over the years and it is getting harder and harder to breathe.
Cystic fibrosis affects every aspect of life. Will you tell us about the realities of CF in our survey?