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Thank you so much for your responses! This really is comforting to know!

Hey guys, I wanted to get some feedback from those of you who have had sinus surgery. I'm having mine done in a couple of weeks and know that I will be admitted onto the CF floor after surgery for about a week. My biggest concern is the 4 or 5 days of packing in my nose and being forced to...

It's quite common for PFTs to fall or remain unchanged while on IV meds. I've had mine fall halfway through week 3 of treatment. Very frustrating, however, they usually bounce back. Your system has to recover from the hit. What is important is how you feel. If you're feeling better then you know...

I use the Icy Hot patches for pain and yes they do work. They're nice because you can leave them on for hours and go about your day. I've slept with them on too.

I've been on Orkambi for 4 months now and am doing well with it. I've seen an improvement in my x-rays, pfts, sugars, weight, and other areas as well. I'm also trying to get used to sweating like a normal person. I feel like a newborn baby experiencing things for the first time. It only took 31...

I would say it does. We do have to watch as to what we are exposed to, like in hospitals or doctors offices where sick people are, so some jobs like that are not ones that are recommended for us. Other issues are finding jobs that we can keep due to frequent hospitalizations that leave us out of...

I'm really sorry you had to go through all this. I'm even more shocked that your doctors didn't forewarn you about the after affects of a Bronchoscopy as well. My doctors told me before I had mine that many times patients get sick, pneumonia, or even a flare up from having one. I did and my team...

I can think of only a handful of times I've ever seen my x-rays. What I know they look for is damage, possible pneumonia, bronchitis, other infections, and other things that I can't remember right now. I know from looking at them where my bones are, the white spots/areas within the lung is the...

Living in Ohio, I'm fortunate that we have many amazing and some of the top CF clinics here. I wasn't unhappy with my first CF clinic but I wanted to go to another one for a second opinion in Cleveland at University Hospital and am still very happy. I do live closer to my first CF clinic. I know...

Aww...i'm sorry to hear that. Then probably what is going on is your lungs/ muscles are just sore from the meds. They're getting new stuff to them and fighting. I have battled with Aspergillius multiple times and whenever they restart the med for that, my lungs feel bad too. Sometimes too, i've...

I'm sorry this is frustrating for you. I've been in your position so many times. My question's to you is how long did you wait before being admitted? Were you on orals before hand? Do you know if you cultured anything out of the ordinary? That would help me narrow my response.

Ok well since days have gone by and my post still hasn't shown up (i'm sure it will at some point lol) I'll give you the short version. My CF team manages my pain. They are very good about it too. However, if you feel you are not being listened to, get a second opinion. It never hurts to have a...

I'm sorry you're going through all this. I know many of us are and it is frustrating. My doctors are very good and comfortable at prescribing pain meds for me and understand why we need them. However, no matter what is written for me, they never give me refills and want to see me if I still feel...

With being in the hospital for weeks at a time and my family not able to visit me everyday and bring me real food, it would be nice if there was a way we could make our own food in our rooms when we get sick of the hospital food. Like a microwave in our rooms would be nice. I know lots of us...

Hey everyone. I just wanted to let you guys in on a new thing my doctors have found to help with constipation issues. There is a med on the market that I'm sure you've heard of and seen commercials for called Linzess. It's made for Irritable Bowel Syndrome. A patient at my clinic who does...

I've dealt with dry cough a lot that I finally have under control. Nasal sprays, rinses and things have not helped me out at all and that's because of all the junk in my sinuses. I am a candidate for sinus surgery. I have a couple of ideas that might help. One, get a wedge pillow for sleeping at...

Yeah, I kept checking to see if it posted on my computer where I posted it from and it never appeared. I was really confused but I wanted to make sure you got my message...lol.

I guess mine didn't post from this morning...As far as I know drug wise for meds against bio-films there isn't anything on the market. I do know that from the CF research site and CF foundation site that there are a couple of studies going on for the development of meds to break down the...

As far as I know about bio-film drug, there isn't any on the market at this point. If there were, I think all CF patients would be taking them because it would help get rid of so many chronic infections we have. I do know from the research sites and cystic fibrosis foundation site that there are...