Recent content by ethan508

I have checked my O2 twice when waking up early AM. Without headache I was 50 bpm and 98% O2, with headache I was 68 bpm and 97% O2. The increase heart rate is interesting, but isn't out of the family of normal healthy. My last clinic measured at 96% and 60 bpm.

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)...

Thanks for posting that study Stephan, very interesting.

I want a doctor/pharmacist (or at least a direct quote from one) to support a claims like "Nothing should be nebulized" on top of Pulmozyme. Not all drugs interact with each other in a neutralizing way. Even if it takes 30 minutes for pulmozyme to fully work, why does that mean I don't way an...

I'm not without a job yet, but I have practiced the art of deflection when I don't want to talk about things (my cough, bad guts, did we use fertility treatments to get our twins, etc). Like Littlelab said, people ask questions like this to break ice and find out more about you. So learn to...

I second kenna's response with one exception. I do airway clearance (vest) concurrent with my nebulized medicines, stopping to huff cough as needed.

I've never wanted a transplant, I would get one for only 1 reason and that is if my kids were still minors. I say that now, but I know the immediacy of the decision could change my mind. We just have so much survival drive, it makes sense for people to want more time living. Hoping I can stay...

I'm looking to switch from Orkambi to Symdeko at my next clinic appointment in May. Hoping for results like Stephen and Penny had. I've been on Orkambi for 2.5 years, and it has improved my lung function and significantly decreased the time it takes me to recover from colds/coughs and...

No test is perfect, but it is hard for me to believe that they could mistake the most common mutations unless there was a complete mix up. I have DDF508 and have similarly mild lung involvement. I've never been hospitalized, have always had high FEV1 (Your 120% is awesome, but without CF...

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...

What was your measured improvement in breathing? Did your FEV1, FVC, or FEV1 25/75 increase (or stop decreasing)? Less wheezing? Less coughing? Ability to take deeper breaths? What were your GI improvement like? Have you gained weight? Or decreased trips to the restroom? Or had less days with...

I think putting oils in the air (diffuser) with CF in the home is ill-considered. Most of an essential oil is made out of a carrier base oil (like olive oil) with a small percentage of the essential oil ingredients. So if the oil is particlized and inhaled, the body has to find a way to dispose...

To win this, somehow it has got to be her decision. If you have a history of lovingly persuading her to a decision, then try that. If you have a history of cold belligerent stand-off with her, you'll need a new approach. Sometimes backing off and making the decision a non-battle ground reduces...

Don't be impatient, you are still young. CF just make pregnancy tougher (both getting pregnant and being pregnant). It would be good to get your weight up before pregnancy. Good doctors and good self care don't keep all the problems away, they just give you the best chance to handle them when...

I too am curious what you mean by "solved" and "all my problems." Those are mighty big claims. The mix you describe would be about 0.45% concentration of NA+ (sodium). Right? In an 8 oz cup this is about a 3/4 teaspoon of table salt. This is about triple the NA+ of Gatorade, but 8X less that...