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?

No longer confined to the sidelines — a Trikafta story

Jan 15, 2020 05:30 am | Jenny Livingston

Replies: 0
I’ve been on Trikafta for just over two months now, and I feel like it’s been a bit of a disappointment when I’ve said that my day-to-day life hasn’t changed that much. This drug is supposed to be “life changing” after all.
Well, yesterday we went sledding and at one point, my nephew was waiting for me at the top of the hill so we could sled down together. So I ran up the hill to meet him.
Did you catch that? I ran up a hill!
I don’t like to climb hills, even when I’m “hiking.” And I don’t run. Ever. For any reason. It’s just too painful.
But yesterday, I ran up that dang hill more times than I can count. I didn’t collapse or nearly vomit from coughing, and my lungs didn’t hurt or feel like they were seizing up. I felt fine!
Although at one point, I did sit down at the top of the hill and cry because I was hit with a startling realization. I wasn’t watching from the sidelines as I so often do. I was able to run and play with my kid for the first time that I can remember. Do you know how crazy that is?!
Last night as I was putting Morgan to bed, I felt tears on her cheek as I kissed her goodnight.
“Oh, no, honey. Why are you crying?” I asked.
“Because you ran up a hill,” she sobbed. Then she assured me, “they’re happy tears.”
This. Is. Life. Changing.
You can watch a video here.

If you’re on Trikafta, have you had an “aha” moment like this one?

Chronic Kidney Disease Highly Prevalent in Cystic Fibrosis, Study Says

Jan 15, 2020 12:58 am | Cystic Fibrosis News Moderator

Replies: 0

Did you know that people with cystic fibrosis have a high prevalence of chronic kidney disease, especially those who received a lung transplant? Click here to learn more.
Does this information surprise you?

Dating and CF

Jan 14, 2020 09:26 am | Jenny Livingston

Replies: 0
Let’s face it — the world of dating can be a scary place for anyone! For those of us with CF, I feel like we have some additional challenges. From coughing attacks and taking enzymes on dates, to talking about life expectancy and the uncertain future, CF adds a level of awkwardness and somber conversations that aren’t typically part of dating for most people.
I’ve been told that I’m “harder to date than other girls” because of the extra time and attention my health requires. I have friends who were dumped when the person they were dating learned about CF and decided they couldn’t commit to a future with someone who would always be “sick.”
But it’s not all bad! On my first date with my partner, I told him all about CF. I mean, the nitty gritty stuff — death of friends, mucus, hospitalizations, etc. I was pretty certain that I’d never hear from him again but before I even got home, he’d messaged to ask for a second date. He took it upon himself to research all that he could about CF, and he never let it deter him from pursuing our relationship. His willingness to listen and learn about CF was, to this day, one of the most romantic things I’ve ever experienced!
What have your experiences with dating been like? At what point in the relationship do you tell them you have CF? Do you have any funny/awkward dating stories?