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So for the past couple of years right before I start to get sick I experience low grade fevers and ankle and leg swelling. After a couple of days of this my fevers run into the 101-103 range and I'm admitted. I have about a two week break between admissions at this point. My doctors aren't sure...

I also had a second thought I wanted to add. Another part of learning the clarinet, when you play, you are supposed to try and keep your cheeks from being puffed out when you play. This might be something she is currently trying to work on, which does make it harder. I threw this rule out...I...

I played clarinet and bass clarinet and when I first started it was a bit difficult but it got easier as I went. My mom and younger sister played clarinet, they both don't have CF, and it was a challenge for them to learn too. It's more getting used to the reed and using all that extra air that...

I agree with the infection control, meds need to be on schedule, and making sure we get enough rest. I always make sure that if I'm on the overflow floor for when our CF floor is full that I tell them not to wake me at night for meds. Let me sleep! I think a lot of nurses don't realize how much...

I always had phantom symptoms that my parents thought were allergies. I was tested for CF at age 7 by recommendation of an allergist nurse. CF sinuses are very different from regular ones. It always looks like we have a sinus infection when we don't. Allergy medication still doesn't really help...

There isn't anything to apologize for. That's why this forum is here to help and support each other. We're here to learn from each other. You have every right to be pissed off and feel sorry for yourself. That means you're not holding anything in and letting it out so it doesn't burden you. I've...

The causes of hemoptysis is usually caused from an infection or just over use of the lungs. My doctor compares this to a skinned knee. If this happens you need to stop all physical activity, hold off on airway clearance, and rest to prevent it from getting worse. Hold off on these things for a...

I agree, the vape pen needs to go asap. The one thing I will say is that teenage years and early twenties are difficult for anyone with CF. It's still a rebellious stage that all of us went through where we all slacked off on medications and did things we weren't supposed to do. We all paid some...

There is nothing to be worried about. You've gone 43 years without any real significant issues. Your results are turning out still really well and normal. There are several cases of adults being diagnosed with CF late, but have had no real issues for years like you have. There are millions of...

I'm so sorry she is suffering through this. The stomach pain and things could possibly be the result of a lack of enzymes. I also wonder if she might be experiencing some sort of reflux as well. I know when I was suffering really badly from GERD, my stomach and cough were a mess. The acid was...

Hey everyone. I had a quick question regarding this topic. I have been on Orkambi for about 10 months now and my experiences have been much different when it comes to PFTs. I'm being hospitalized about every 3-4 weeks because I keep getting "sick", but my lung functions are stable and improving...

I'm sorry none of us really seem to have answers for you. I'm completely clueless. The only question I can think of to maybe help is is your daughter being seen at an accredited Cystic Fibrosis Center?

When we were trying to figure out my acid reflux, my doctors switched around my meds too to see if some made a difference or not. It turns out I needed to have surgery to fix mine. Which has improved everything. Follow up with a GI doctor if you're not already doing so. They might have a...

I'm not sure about the cough and tight chest...could be just part of the bug you have. I have had a couple of sick times where I was coughing so hard I lost my voice. It did come back. In the meantime, try and drink some tea and honey or hot chocolate. Something to sooth your throat. Even a...

When you use the Vibralung there are 3 different settings. Low, Medium, and High. Each one lasts a total of 7 mins. and repeats a pattern of sounds at different frequencies. It kind of sounds like an old video game. The sound waves then vibrate in the lungs to move the mucus. I put my hand on my...

So I recently found out in my search for answers in treatment for the swelling and fevers that happen before I get sick that I have an immunodeficiency that mimics Lupus. I have a CF clinic appointment tomorrow that I will be asking for recommendations on doctors to see. I was curious though as...

Yes, a home regimen is 21 days and in house stay is 14 days. This is for a couple of reason I think. At home you're in a normal environment and not on a strict regimen like you would be in the hospital. The strength of medication you can get at home is probably limited and requires more...

Absolutely normal. He has high powered meds running through his system and that's going to dehydrate you. Plus he needs to stay as hydrated as possible to help flush everything out along with mucus even when not on meds. Most CF patients when they are in the hospital are on a constant hydration...

I ran competitively in track and cross country for a number of years. I would say go to a running shoe store. Not a big name store like Dicks sporting goods or something like that. Your foot size, width, and arches of your feet, depends on what shoe is going to help the most. At a running store...

I agree with the nothing to cough up. I wasn't able to cough anything up until I got into my 20's. When I got sick I would have bad dry hacking coughs but would never bring anything up.