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I am switching from Orkambi to Symdeko because the Orkambi had consistently increased the tight feeling in my breathing despite me picking up increases in my FEV1 and FVC, (FEF25-75 will be 25% lower when I do PFT after taking Orkambi compared with a PFT done prior to my morning Orkambi dose)...

From "You're Only Old Once" by Dr. Seuss This small white pill is what I munch at breakfast and right after lunch, I take the pill that's Kelly green before each meal and in between. These loganberry-colored pills I take for early morning chills. I take the pill with zebra stripes to cure my...

It has been a while since posting and I want to share my experience on Orkambi for the last 15 month (TL;DR version: Orkambi is helping my system when I don't have Orkambi in my system). First some history. August 2015 I got my script for Orkambi, pre-Orkambi PFT was: FEV1=94%...

I've got my clinic visit coming up next week and am conflicted about starting Orkambi. I don't love the price (even though I won't bear the brunt of the price, I don't love making my self-insured employer pay), I'm nervous about possible side effects especially those involving the liver, and am...

I've noticed this 'glitch' a few times and just wanted to explain how the oft misunderstood ‘thumbs up’ feature works on this forum. When you press the green "thumbs up" icon on a post the page will refresh and show a red "thumbs down". Know that you have not just 'thumbs down' someone. What...

I've had a problem with dozing off at work (and church and home) lately. Fortunetly I've been doing CAD at work, my co-workers and boss seem to not notice, and I've been able to stay late to make up the work missed during my naps. But it is getting frustrating. My cough hasn't increase, my last...

If any of you want/need a good sermon for Easter Morning, my church has two session of a conference being webcast Sunday morning 10:00-12:00 and again 2:00-4:00 (Mountain Time). Choir singing will be streamed for 30 minutes prior. I always find these conferences very uplifting. If you miss the...

Does anyone else get mouth cankers when they are on inhaled Tobi? It seems like I always end up with 1 or 2 really big cankers for each Tobi session which make eating and talking painful. Any suggestions for remedies or prevention? I've been mouth rinsing with warm salt & baking soda water and...

Slugo, I hope you don't mind but I turned your private message into a post. This is so other people with similar experiences can chime in.

Have any of you used the spiro PD at home? What are your thoughts on it? Could you get insurance to pay for it? http://spiropd.com/

Below are a couple link about a new research drug that penetrates biofilms and can target resistant bacteria: http://www.ksl.com/index.php?nid=148&sid=33528669 The video is more detailed than the text. Here is second story that is a bit more science-y...

Being on this forum has made me question my assumptions about health care coverage a bit. One of my 'goals' in life is to never be without health insurance in some form. To pay straight out of pocket the $15k of monthly drugs it takes when CF peoples are healthy (not to mention the $$$$$ when...

Not a crisis per se, but I sometimes have triggers that put me into "CF is going to get me" anxiety mode. I've been in CF freak-out mode for the last week or so. This was triggered when my older brother went in for a clean out coupled with me getting mild flu and sinus infection. In general my...