Diagnoised as an adult with rare form of cF
Last updated: January 2022
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.
How do you connect with other CFers? (select all that apply)
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