Origins of the Fat Cyster

A little bit of background on my life and how I got to this point..

[@GamingNinja1998]

you probably just have a more mild form of cf, mine was real mild until I was about 19 then things rapidly went down hill. As a child / early teen my Lung Funtion was in the 90's and I would never get out of breath. but I cought an infection at 18/19 because of living in a bedroom with mould, my lf at 18/19 was about 86-88%, how ever now im 21 and my LF is under 70% and rn about go in hospital for this same infection. Also the weight is probably helping you on the CF side, my doctor allways said the heavier you are the easier it is for the body to fight infection and prevent further infections. and ive been under weight most of the time sitting between 17 and 20 bmi (23 is what my doctor wants) when ever ive been over 20 bmi though i have felt a lot more healthy and i can blow over 70%, all my most recent Lung Functions are when ive been at my heaviest. Ive got a similar gene lays out to you, One F508Del and one minimal function mutation. how ever here in the UK we havent got access to the new triple therapy trikafta yet, only Orkambi and Simkevi, which dont affect us with only one copy of f508del. hoping to get it soon though doctor thinks end of 2020 maybe.

[@angelarutter9237]

Ryan Perkins I hope your hospital stay is short and successful. I know the weight helps me but it’s getting to the point that one doctor (not my CF doc) suggested weight loss surgery before I get any bigger. I’m not going that route, nor would I be approved for it anyway. I hope you get access to Trikafta soon, it seems pretty amazing already and I haven’t even been on it for a month.

[@SnoWhiteSally]

Even with ensure my friend with CF can’t gain. She eats about 3000 calories a day and is still tiny. Her cf is considered quite bad, I wonder if there are different strengths?

[@angelarutter9237]

SnoWhiteSally My doctor always said “there’s no such thing as a mild case of CF but you have a mild case”. CF, since it’s genetic, you either have it or you don’t but my doc said he believed our other genetics played a part in how bad it got. He always said I had great genes other than CF to stay so healthy. Who knows. I just know I’m blessed. :)