So, I'm a male 20 years old and want to move out of the country in the near future is this possible? submitted by /u/Doedoe_SA [visit reddit] [comments ..read more

Hello everyone! I have CF and I recently was ill for 2 weeks while I lost 3 kilos which I should gain back now. The problem is I still don’t have apetite, can’t eat a whole meal, only half, or 1/3 of it. I only enjoy eating fruits and yogurt. Do you have any suggestions how I could improve my appetite? submitted by /u/Trick_Muscle3883 [visit reddit] [comments ..read more

My fiancée (26F) has cystic fibrosis (Double F508del for anyone curious). Unless a miracle occurs, she is most likely nearing the end of her days. We're trying to get referrals through for her to be seen by the specialist team at a nearby internationally acclaimed teaching hospital to see if they have any novel options that may extend her life in a meaningful way, but we are preparing for the reality that she will likely be on hospice care within the next few months. Her most life-threatening complication at this time is that her digestive system is close to non-functional. She can drink smal ..read more

I'm always told by my doctors not to worry about how much fat I'm eating, but I can't help but wonder how true it actually is? Just because we have C.F doesn't mean we're immune to heart attacks. I know they say it's because we have poor fat absorption, but what happens to the fat that DOESNT get absorbed ? How much % of fat are we actually absorbing or can it even be measured ? Should I actually be cautious about my fat intake ? Not looking for medical advice, just want your guys opinions . Thanks in Advanced ! ? submitted by /u/anon_707 [visit reddit] [comments ..read more

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