adult cystic fibrosis

[rvm1212]

My boyfriend has been diagnosed with cystic fibrosis last year at 35.  He had a persistent cough with sputum during winter for the last 4-5 years.  He would be fine in summer with no cough.  His Fev is 94% FVC: 95%.  S.Aureus sensitive to every antibiotic in sputum . No pseudomona. Some bronchiectasies in ct scan.  His genetic test came back positive.  
Since he was treated with oral amoxyclavulanic he has been feeling fine with  no cough. He had to used it 3 times last year for excerbations. He is pancreatic sufficient.
I would like to know about the prognosis on people diagnosed this late in life. I know mediam life spam with cf it´s around 35 but he is that age right now with normal lung funtion and without taking any treatments until diagnosis. So I´m guessing that now that he has started treatments he will have a better prognosis, but I would like to know about other people outcomes that were diagnosed that late.
Thank you.

[Sunny602]

Hello! I was diagnosed when I was 33 with atypical CF. I too have little lung damage (mild bronchiectasis) but I do grow out B cepacia, S aureus, steno and PA. Of course living on a vent (for a totally different reason) helps bring those bacteria to my lungs! I am now pancreatic insufficient so I take enzymes and have DM related to the pancreatic issues. The thing with CF is that I have interacted with people who are nearly 60, but have milder mutations and some in their teens who just went through double lung transplants. Do you  happen to know his mutations? If he has milder ones (like in class III, IV or V) that often results in a slower progression. CF is a progressive disease..please know that. Is he on any other meds or chest physio? I am on the Vest which is CPT twice a day, more if I am sick. I am also on pulmozyme which thins the mucous, that is a nebulizer. I grow out pseudomonas so I am on rotating schedules of inhaled tobramycin (on one month, off the next and so forth). I also am on IV therapy at a minimum of 3 times a year whenever the bacterial colonies get to high as well as when I start to feel lousy.
If you want to ask anymore questions, you can email me....there is also a wonderful website cysticfibrosis.com that has tons of info and forums as well.
I am glad that he finally has the correct diagnosis so that he can now get the right treatment and be treated aggresively for any infections.
Sunny :)