Hey all. My 9 year old was just diagnosed earlier this month. It was unfortunately missed due to the state he was born in’s guidelines/parameters for the newborn screening, being different. We discovered this due to a chronic cough that we have been trying to get under control since he was around 3. It was misdiagnosed as asthma, allergies, food intolerance, acid reflux. We actually were looking into genetic testing for PCD but wanted to rule out CF, and well, here we are. They first ordered a CT scan which showed a lot of bronchiectasis and forgive me but I don’t recall the other terminology ..read more

Hello! I (29m) have been having health issues since February of 2023, which started after I caught covid for the first time. I've been struggling to get a diagnosis ever since, but started seeing a great rheumatologist back in January of this year. All my bloodwork came back negative, but an MRI showed a bone spur in my SC joint, and based on my symptoms my rheum thought I might have Ankylosing Spondylitis. My worst symptoms are fatigue, extreme stiffness in the morning, joint instability and bilateral tendonitis in several parts of my body (first elbows, then thumbs, and later my shoulders ..read more

I'm currently doing a week of blood monitoring from my annual review. Usually I do the finger prick method before and 2 hours after a meal and the results are usually within a normal range, However this year I was had a monitor attached to my arm and I can view my blood levels in real time. Being as obsessive as I am I probably check it 50 times a day and I've noticed that for a short period after I eat my levels will spike to levels outside of the normal range and then return to a normal range before the 2 hours post. Just wondering if this is common or am I on the verge of being diagnosed ..read more

Recently my PFT has stagnated rather than increase. My most recent PFT and my PFT 3 months ago were both 123%. What is normal for non-cf people? 5’6” 120LBS submitted by /u/Just_Doin_Shit [visit reddit] [comments ..read more

I was talking to my girlfriend earlier, asking how her period cramps are currently. She told me and jokingly said she wished she could find a period simulator for me to try. I joked back and said if I could find a lung simulator I would trade her. I was curious if there is anything like this that exists? I've joked with my friends about it randomly too, that I wish they could have an insight into how my lungs and breathing feel constantly. Not in a malicious way, just to enlighten them. submitted by /u/dnestheide [visit reddit] [comments ..read more

My endocrinologist put me on Ozempic this past February as a replacement for Trajenta. My A1C was hovering around 6.8 and I’m “technically” borderline CFRD. First week at .25 was okay. Following week I started having nausea and was really irritable. Ended up going in the hospital for a CF flair up and was on regular insulin. Well when I got out I went back on Ozempic and was at the .5mg. Last week the nausea came back and I ended up throwing up. This week it’s been constant nausea and stomach pain. Anyone else having these issues? I’m stopping the medication with doc approval it’s just not wo ..read more

Hi everyone. So im wondering how bad (or effective) is it to take enzymes that are way passed their date. Long story short, ill be able to pick up new creon in two days from the pharmacy, but i ran out just now. I have a couple of boxes of older creon, but they expired in November 2022, more than 2 years ago. I could go to another pharmacy and buy one box but i dont know if its worth paying for it when ill get free creon in less than two days. Im also on trikafta/kaftrio, and i was wondering if i could squeeze by with expired creon for now. So do you think is it worth taking expired ones, or ..read more

submitted by /u/kitty-yaya [visit reddit] [comments ..read more

Hi there, I'm an MSc Psychology student in the UK looking for parents of children aged 0-5 with cystic fibrosis (or other conditions screened on the UK Newborn Bloodspot Screening) to interview about their experiences of the transition to parenthood. Please do get in touch (mils3_23@uni.worc.ac.uk) if you're interested! submitted by /u/S7r5h [visit reddit] [comments ..read more

I had my gallbladder removed in March and a month later we find I have an abscess. The abscess warranted a drain to be placed. Said drain enters around the end of my rib cage. Thankfully the abscess wasn't infected, however I've still got the drain and will have the drain (as it currently stands) for the concert. I was curious if others have experience going to a concert that will have entry security while carrying one or more of the many "accessories" we are afforded. The closest I have to compare was an IV pump that I felt self conscious about taking to the movie as it was quite loud while ..read more