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I agree with Jricci...some insurances won't cover certain meds if it's not written from a specialist doctor who sees you for what you take. It kinda makes sense, you're not going to get coverage for a drug if you're not seeing a specific doctor regularly who specializes in the use of these...

That's really interesting. What's it called and have you noticed a difference since you've been on it?

It's absolutely fine. I live in Ohio and have been to Hawaii 4 times. That's a long trip but so worth it. The important thing is to prepare and pack for the worst. Find out where the closest CF clinic is to your destination, just in case. Pack any meds that you might use in case you flare up...

Has anyone started taking Avycaz during their tune-ups? I might be switched over from Colistin to this. Wondering what your experience with it was. How did it make you feel... ect.

Yeah, husband comes first. She needs to move out. Until then while she's sick, she needs to wear masks and what not to protect your husband.

I started out on Orkambi first then switched to Symdeko. If you're just started your first CF corrector med, you're going to go through a purging period. It's tough, but worth it. Like Ratatosk said increase airway clearance and drink a lot of water (I add crystal light to mine and it makes...

Not sure if you are doing this or know about this, but my ENT who sees a lot of CF patients, has us adding a drop of baby shampoo to our sinus rinses. He said it helps keep things clean and clears out the junk a little bit better. That might help a little bit. If he sleeps propped up that will...

I know a lot of CFers have jobs where they can work from home or remotely. I don't know specifics, but I'm just sharing the knowledge I have.

They have a 5% and 3% hypertonic saline...I use the 5% because the 7% is too strong for me. See if maybe she can try the others..it helps!

It is possible to have CF and not have any tell tale signs for years. I was diagnosed at 7 and some people on this site have been diagnosed as adults. I know this must be a huge adjustment and shock to you and I'm sorry. But think of the good things if it is. You're getting answers as to why...

I've had this happen many times. It's frustrating and completely normal. Sometimes I will feel amazing and my pfts will be low or I will feel like crap and my pfts are amazing. You're not the only one this happens to. Just remember, your pfts are just a number and it's more important on how you...

Here's the trailer https://www.fivefeetapartfilm.com/

For those of you who don't know March 22, 2019 in theaters EVERYWHERE there is a movie called Five Feet Apart that is about a friendship between two CF patients who meet while they're both being treated in the hospital. Even though the title is about a foot off from being accurate..lol...I'm...

I've had acupuncture since I can't take regular pain medications. It's amazing and I love it. I've used it when I used to suffer from really bad headaches and from shoulder injury during physical therapy. The needles are so tiny and don't hurt. Really the only thing you feel is the plastic...

Welcome to the forum, sorry about all you went though to get your diagnosis. While most CFers are diagnosed at birth, some are diagnosed later in life too. I was diagnosed at 7 and I know a couple people on this forum who were in their 40s or 50s before they got their diagnosis. Honestly, the...

I don't paint, however I think you should get her the paints. If it's therapeutic to her then I think it's worth it. With CF there are some things that may irritate one persons lungs and not another. It depends on the individual, so they might not be an issue for her. There are also painters/...

I think almost every teenager with CF, as long as they are healthy and their CF doesn't get in the way of living a normal life, don't bring it up or take a real interest in it. I know I didn't. I know I didn't. I ran cross country, swam on summer and winter swim team, played clarinet, and made...

I know carriers can have symptoms of CF, but then again anyone can have CF symptoms. What are your symptoms that you're experiencing? I only ask because when people get the news that they're a carrier, sometimes their mind takes that diagnosis to the extreme.

I would get checked by a GI doctor for GERD. It sounds a lot like what I went through before I was diagnosed with it. I had to have a Nissen Surgery to correct it and haven't had any real problems since.

I get this too. My dad keeps our house so cold all year round and going outside or coming back in results in a major post nasal drip episode and coughing fit. Not sure how to fix this.