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My sister passed from CF and left behind a gently used Hill-Rom vest. She also left behind a year's worth of Symdeko and I'm not sure what to do with it. Any suggestions would be much appreciated. Thank you.

I'm actually on my 2nd week of Trikafta and I will tell you this... it IS the real deal! Within the 1st couple of days, I immediately felt a difference! I almost forgot what it was like to breathe normal! I could take much deeper breaths to the point where it actually hurt cuz I have not been...

Be careful not to rush into embolization after embolization cuz as you may or may not know, every time they do an embolization... it burns surrounding healthy tissues leaving big pockets for infection to accumulate. After my 6th (failed) embolization, I had to have 2/3rd of my right lung removed...

Michaelp397 - They do have a 3.5% that I've had much better tolerance with. You should mention it to your doctor.

They do have a 3.5% that I do much better on than the 7%. You should ask your doctor about it.

I have had acupuncture in the past by a real Chinese medicine and herbal remedy practice. I've also had homeopathic remedies as well. Both worked very well & am currently looking into getting back into acupuncture, but it can be expensive. This is why I stopped, but all in all, it was very good...

For me, Orkambi made my breathing more debilitated and Symdeko didn't really have any tremendously significant benefits. But, there's a new drug that's supposed to be on the rise to add to either regimen that's supposed to significantly increase PFT's. Regardless, everyone's experience is...

For me, I have to take a daily regimen of antacid like Nexium or Prilosec. I also have to take gas X on a regular basis. But to help with chronic constipation, I have to take Miralax to keep my bowels regular, even with enzymes. Hope that helps.

I never knew there were so many different mutations that people can have. The way I always saw it is CF is CF and regardless if it effects people differently... eventually if effects the entire body! But, we all do the same treatments, get sick and have to be hospitalized the same. Some people...

You DO have a beautiful soul to extend your heart and thoughts to a complete stranger! It made me teary eyes when you replied the way you did, because I normally don't get that kind of support, not even from family. I'm really happy for people who have a boyfriend/husband/great family & friends...

I'm really on the fence about reading other CF'ers stories, because it's really difficult to remain optimistic about the future, when you read how sick someone is and everything they and they're families are going through. We all need support from people who understand what we go through, but...

daily doses of Miralax followed by a lot of water is the best relief. I have bouts of bowel obstructions, but keeping up on the miralax helps to prevent them. good luck!