“Hey Glenn! I am so sorry that I’m glitching on your end for some reason. Jenny and I have been texting about this, and I am for her sometimes too… So we will get to the bottom of it, promise!

Yes, I have atypical CF. I was once diagnosed as PCD, but that we before I went to a CF clinic. Since then, they actually shifted it to CF (or CFTRD)-… Read more

Sorry to hear about your sister, and sorry we have all that in common. They were telling everyone back then a cure was close. Maybe it was a good thing. Hope was in short supply back then.. Not anymore though!

This is nothing short of mind blowing for me. I’m thrilled it is having such a positive impact for you Jenny, and for others taking it. I’m sure I’m no different than others who can’t help but think of friends and/or family with CF (my sister died at 14) who had very little to no treatment options at the time, and how far things have come.. … Read more

I can’t seem to reply directly to you Bailey. Clicking on “reply” sometimes works and sometimes doesn’t for whatever reason.. To answer your question, my kidney function is a bit worse than normal due to the transplant meds, but I still feel pretty well, so I take no notice of it. That’s pretty much it.. I take insulin/creon, but otherwise… Read more

Jenny, I’m glad you are in a place with less virus! Hoping it stays that way, and you and your family stay safe and healthy! I’m sure you know what’s best for yourself, but still, be careful 🙂

Yes Claire was hard not to like.. I had wondered why they don’t give blood thinners as a prophylactic after transplant surgery since I think it’s… Read more

Hi Jenny! Hate to start my first post here on such a sour note, but do be careful please! I’ve actually gone the opposite route you have. I largely ignored the fear and paranoia.. I’ve left CF behind so to speak (double lung tx) and now another illness was going to isolate me again? nope.. I wasn’t reckless, but I went out, saw… Read more