Cystic Fibrosis News Today Weekly Forum Digest

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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news?

Neb Machine Recommendations (Please and Thank You!)

Sep 17, 2020 07:55 am | Bailey Vincent

Replies: 1
I’ve been talking about nebulizers and clearance routines this week, and I was wondering:
What nebulizer do you use or recommend?
The one I use right now is pretty standard- it’s a Pari neb I got on Amazon long ago when my last one broke. I used to go through the hospital/insurance to try to save money on nebs, but it takes so long and creates so many more hoops to jump through, that I bought this one outright and moved on with my day.
However, this means I couldn’t get the most expensive/fast version, and sometimes I wonder how much time I could save in my day with a better neb?
I’d love to know your personal tips, tricks and brand recommendations!

Holidays and family traditions

Sep 16, 2020 09:35 am | Jenny Livingston

Replies: 0
As we head into fall and the holiday season, I’ve been thinking about the ways in which our seasonal family traditions will be different this year. My extended family is very close and we generally have large family celebrations for all the major holidays.
Halloween is a favorite of ours and we usually celebrate with an outdoor carnival party: food, games, costumes and contests. I’m not sure if it’ll be safe or reasonable to keep those plans in light of the pandemic. Thanksgiving this year won’t include extended family crowded around a table, eating and laughing together. Neither will Christmas. And while I understand that these changes are temporary and for good reason (we truly don’t want to put our family members at risk) it’s still a little sad to think about.
What are some of your favorite family/holiday traditions? How will those plans and traditions be affected by the pandemic? What will the holidays look like for you?

Nebulizer Meds: Side Effects?

Sep 16, 2020 09:14 am | Bailey Vincent

Replies: 1
Yesterday I wrote about changing my lung clearance routine to adapt to pain needs, but today I was wondering:
How have your inhaled medications changed YOU?
I saw a tweet about how someone looses their voice on Pulmozyme, which has not been the case with me (although I’m Deaf, so technically not the greatest source). But I can feel how Tobi has changed my voice in the past when I’m on it, so now it’s definitely a common occurrence.
Have any of your nebulized medications given you notable side effects? And, did you stay on them or adjust/accept throughout the years?