I’m in my early 20s. I started growing pseudomonas young and it did cause a few problems so I did IVs a bit. But in between the IVs I was fine, my lung function would be between high 70s and low 80s when I finished IVs and then started dropping into the 60s when sick when I was about 15, it would up straight away on IVs though. At one stage when I was 15 it was 86 but I had to do so much to hit that type of number. I would still have considered myself very lucky with what I was able to do and have a good school attendance and not feel sick most of the time.
Unfortunately pseudomonas mutates and becomes resistant over time. When I hit 20 things got a lot more difficult with IVs. My baseline was confirmed to be low 60s no matter what I did. I had uncontrollable pneumonia and was resistant to all the antibiotics. I didn’t really get properly better and even though my baseline was 60s I was on so many IVs to maintain that and not get incredibly sick that I had to be assessed for transplant because things weren’t great. I also suffered from regular hemoptysis.
Then I started Trikafta and my lung function is 90% some days. I feel good and can’t remember feeling like this. I don’t clear copious amounts of dark mucus everyday. My lung function hasn’t dropped at all without oral and IV antibiotics. I feel so incredibly fortunate that it has worked like this. I know my lung function is very good but I still worry about next time I’m ill as my pseudomonas is still completely resistant. However, I’m hoping with the thinner mucus and less inflammation it will be easier to treat.