Hello all, I’m a (26m) diagnosed late in life. I do not have respiratory CF but I have pretty wicked GI symptoms that make day to day at work hard. As of late things have been harder than usual. I was wondering if it’s even worth trying for disability since I don’t have really bad respiratory symptoms? Or is it a lost cause? submitted by /u/Conscious_Nobody7157 [visit reddit] [comments ..read more

Hi all, My husband has CF and started Pulmozyme about a week ago. He started getting hives and itching within the first 24 hours. We initially thought the hives was from doing yardwork or something else, but we realized it was probably the Pulmozyme when they didn’t go away. We stopped the Pulmozyme when we realized that might be the culprit, and notified his care team. They agreed with our plan to stop until the rash subsides, and then slowly increase to build tolerance. I reviewed the prescribing info on Pulmozyme and see that a rash is one of the side effects, and I’m not too concerned abo ..read more

Every time I get hospitalized, my doctor puts me on Vancomycin if needed.I have a history with this medication, so it’s not new to me, but I find it very annoying and painful. (as much as it helps and I feel myself gaining energy.) I tend to get Red Man syndrome, which is basically an allergic reaction. I get all red, hot, and itchy. It’s very annoying when trying to sleep (even though sleeping in the hospital is already a pain). The nurses try to tone it down with Benadryl, I believe? But it is an absolute PAIN in the veins. Whenever you start getting the Benadryl first before the vancomycin ..read more

Hello all - slightly random, but do any Canadian or American CFers have any top tips for nutritional supplements you’ve tried? (I’m thinking of shakes, bottled drinks, that kind of thing - primarily energy and protein in a liquid-ish form.) Not for me - I’m covered where I live - but for a friend with cancer who is struggling to get much energy down. Any tips very gratefully received! submitted by /u/RadderLungs [visit reddit] [comments ..read more

Hello all - slightly random, but do any Canadian or American CFers have any top tips for nutritional supplements you’ve tried? (I’m thinking of shakes, bottled drinks, that kind of thing - primarily energy and protein in a liquid-ish form.) Not for me - I’m covered where I live - but for a friend with cancer who is struggling to get much energy down. Any tips very gratefully received! submitted by /u/RadderLungs [visit reddit] [comments ..read more

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Please use this thread to update everyone on how your health is going and discuss any concerns you may have during the week. submitted by /u/AutoModerator [visit reddit] [comments ..read more

Please use this thread to post links to your blog, vlog, calls for charity, and requests for assistance with any research you are conducting. submitted by /u/AutoModerator [visit reddit] [comments ..read more

Hi, my son (12) started on trikafta last June. He has amazing lung function, averaging at 109, but struggles with digestive issues. It's been hard to measure the success of trikafta because his pfts were already high. About 6 months in we started to gradually reduce his treatments and test how he was doing. Each month we took off one thing. He's 12 and very reluctant to discuss any of this, so asking him how he's feeling is not productive. In January of this year, he really started to dwindle out. No energy, very depressed, and so so angry. When we try to talk to him about any of this he scre ..read more

I try to live life normally but when i have a cold i randomally throw up anywhere and everywhere. The muscas builds up in the back of my nose/throat and i go to the bathroom over the toilet and gag and spew for 15-20 mins. Its so embrassing. Ppl dont understand. submitted by /u/eastcoast82 [visit reddit] [comments ..read more