USA to Canada
Reddit - Cystic Fibrosis
by /u/Wise_Appointment4883
18h ago
Hello I’m just curious if anyone has moved from the U.S. to Canada. If so how did that process go with doctors and insurance? I’ve heard trikafta is available in Canada. Might possibly move with my girlfriend in the future, thank you in advance! submitted by /u/Wise_Appointment4883 [visit reddit] [comments ..read more
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Information on DF508 and D1152H
Reddit - Cystic Fibrosis
by /u/PTT_FOR_LIFE
1d ago
Just seeing if anyone here has these mutations and what your experience has been like? I’m really interested in your age at diagnosis. submitted by /u/PTT_FOR_LIFE [visit reddit] [comments ..read more
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Can you Develop in the mid of life ?
Reddit - Cystic Fibrosis
by /u/miguel891
1d ago
So I m24 I suffer from mucus and phglem for 6 years I have done ct scans ,x ray,bronchoscopy they didn't find something unusual , I take nebulizer to clear it up I was today in a doctor's appointment Ent ,and he checked my nose with ct scan and with a small tube with camera that shows the throat and the nose area ,and he saw that my throat is very irratied and thick mucus stuck there ,and I feel it greatly lol, I have done sweat test few years ago they didn't find anything too ,the only thing that left to check is genetic test to do Just curious how possible is it to develop something like th ..read more
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Donate VARON chargers/batteries
Reddit - Cystic Fibrosis
by /u/Still_Equipment5986
1d ago
We have VARON products such as NT-05 chargers and batteries, as well as charging cables. I really want to give these to those in need. I hope this is the right place! submitted by /u/Still_Equipment5986 [visit reddit] [comments ..read more
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Creon suddenly stopped working?
Reddit - Cystic Fibrosis
by /u/Ok-Average3876
1d ago
Up until recently my 18 month old was on one scoop of Creon micro per 3g of fat. A couple of weeks ago his poops just got looser and paler even though we didn't do anything different. We swapped the jars over and kept the new ones in the fridge in case they'd somehow broken in the heat of our house (a new build) and kept the new ones in the fridge but that's not made any difference. We upped the dose to 1 scoop per 2g of fat as of last Thursday - it's been almost a week and no change. We're now (as of last night) started doing 1 scoop of Creon to 1g of fat. We're also measuring out his food ..read more
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Atypical CF or am I overreacting?
Reddit - Cystic Fibrosis
by /u/Holiday_Desk_2840
2d ago
Idk if I have atypical CF or if I’m just overreacting. I have an awful cold rn and I’ve been so congested I literally feel like I can’t breathe sometimes. I’ve tried everything but nothing can get rid of the super thick mucous. Most of the colds I’ve had were like this too and I thought it was normal (it probably is and I’m overreacting) but I just realized none of my roommates have ever had colds/coughing this bad. Ik I carry the CF gene (it runs in my dads side of the family). Growing up I was normal except I’ve always been thin and had a hard time gaining weight and I’ve had on and off GI ..read more
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Question about trikafta
Reddit - Cystic Fibrosis
by /u/flw3rrr
2d ago
Has anyone who is taking trikafta had anything happen to their mental health? I’ve noticed some have had it ruin theirs, including mine. It made me sad and not really enjoy anything. I remember talking to my doctor about it, and they thought it was weird since it was fairly new and they were just worried about a rash. But I told mine, at least, to keep an eye on anyone in case. since it really messed me up. I still take it, and I'm much better now, and it definitely helps my health. submitted by /u/flw3rrr [visit reddit] [comments ..read more
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Young, in love, and scared
Reddit - Cystic Fibrosis
by /u/Brilliant_Engine_905
3d ago
hello i am an 18m, who has recently fell in love with the women of my dreams. she is my everything, and i can’t imagine a life without her now. she told me the first time we hung out she had cystic fibrosis. at the time, i had no idea what it was. i now have done a ton of research on the illness, and understand better than i did. basically, im really scared guys. i don’t want to love anyone else on this planet, she is all i want. im petrified to have a life with this girl, im scared to get married, and have kids, and then she leaves me at a young age. at the same time, it would be unfair to l ..read more
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Sweat rusting things
Reddit - Cystic Fibrosis
by /u/KeyPie6522
3d ago
Hi, I’m just looking for info but I’ve been consistently having very thick stringy mucus in my sinuses and lungs each time I have a cold or allergy. I’ve been having flares of asthma and reflux with choking/coughing that produces very thick mucus. I was reading about the sweat test and I was wondering if you have a lot of chloride in your sweat does that mean you potentially rust things made of metal? I’ve always rusted staplers at my work just from using them. I think in general my sweat is very corrosive. I’m 41. I know most people are diagnosed early in life. I feel like if I ask to be tes ..read more
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To be honest, I’m scared
Reddit - Cystic Fibrosis
by /u/ConnorMeaty
3d ago
I 20M have been going through a slight mental crisis recently. After recently turning 20 and being cursed with the knowledge that the life expectancy of a CF patient is 40, I am constantly overthinking every decision I make and constantly kicking myself for ‘wasting my life’. It’s also the thought that this is where things get hard as I’ve had it pretty easy being only admitted to hospital 4 times. So I has sit here at the half way point, I’m just looking for advice. Because I’m terrified. Ps I never knew this community existed and scrolling through it has got me quite emotional knowing that ..read more
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