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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?

Nutritional Philosophies: Where Do You Land?

Aug 27, 2020 05:51 am | Bailey Vincent

Replies: 0
My nutritional needs vary all the time, but I often come back to periods of eating “soft foods” to help myself digest. Ever since my fundoplication in 2015 (when I had to eat soft stuff for awhile because I was too swollen to swallow larger items), I’ve struggled with feeling “better” on soft, easy to digest, low-chew items, versus rough content.
After my colon was removed a couple of years ago, this has only increased, as I still get partial blockages if my food choices are dense.
I spent the past weekend really diving into soft but high-calorie foods as a way of keeping my weight up, but not taxing my digestive system. The less I chew, the better I feel… but how bad is this for me really?
As a dancer and health nerd, I’m sort of worried to admit this “out loud” because I’m already judging myself. Most of my diet is protein, fat and dairy, which is not generally advised for mucus production, and every time I try to go vegan (to match my moral principles) I both can’t consistently afford it, nor ignore the eventual GI distress.
I love a company called Kencko for their blended, pre-prepared fruit and veggie shakes (really tasty), but even those sometimes irritate if I go too wild. All in all, I sometimes feel a mental and moral disconnect between what I want to eat and how I believe others should eat, and what I actually put in my mouth.
Question: Do you have any specific foods you must avoid or any exact way of eating that helps your GI?
Let’s talk personal nutrition philosophies!

Birthday thoughts

Aug 27, 2020 01:14 am | Jenny Livingston

Replies: 1
Not to toot my own horn, but today is 33rd my birthday!

There was a time that birthdays didn’t mean that much to me. It would have been easy for me to let them slide by unacknowledged. But as I’ve gotten older, I’ve come to appreciate them so much more. In fact, I’m now a firm believer that we should celebrate the beauty of life anytime there is reason to. Birthdays? Celebrate! Anniversaries? Celebrate! Milestones and accomplishments? Celebrate! A random Tuesday? Celebrate! I think you see my point.
I now treasure birthdays and refuse to let one pass without acknowledging what a gift it is to be alive. “Growing older is a privilege denied to many” and I am so grateful I’ve been granted that privilege so far.
How do you feel about birthdays? Do you like to celebrate them or let them pass quietly? Just for fun, what is a favorite birthday related memory you have?

Adaptability: Expecting the unexpected

Aug 26, 2020 09:49 pm | Jenny Livingston

Replies: 4
I’ve lived with CF long enough to know that the only certain thing about it is uncertainty. There have been countless times in my life that CF has thrown a wrench into even the best laid plans. As a child, I missed weeks of school at a time. As an adult, I was nearly fired from a job due to my “inconsistency.” As a college student, I took final exams from a hospital bed — twice! As a parent, I’ve missed school programs and other important events in her life (thankfully, she’s had other supportive adults in her life who consistently show up for her when I can’t).
The point is, CF adds a tremendous amount of uncertainty to our lives. I’ve learned to roll with the punches and adapt to new, sometimes difficult or incredibly uncomfortable, situations.
Right now, I’m navigating a significant change in plans regarding my daughter’s schooling. We thought our minds were set. We thought we’d made the best decision for our family. But as time goes on and we’re given new information, those plans are changing. I’m struggling with the uncertainty of it all, while also realizing that ultimately, we’re going to be okay. We’ve handled tricky situations before. We’ve got this! I think that CF is at least partially to thank for my ability to handle tricky life changes because it’s given me so much practice!
Have your plans ever been derailed by CF? (If so, I’d love to hear about it!) How has the unpredictability of this disease affected your life? How do you adapt to big or sudden life changes?