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?

How Do You Deal With Loved Ones Getting Sick?

Feb 17, 2020 06:36 am | Bailey Vincent

Replies: 0
My kids got the plague last week. Not really, but basically. And then my husband got it (sort of). And a lot of my dancers are sick too. I am facing down another sinus surgery super soon, and have been pretty “infecty” (technical term) since Thanksgiving, and am hoping to catch a break eventually and turn things around. I have a lot of major work deadlines coming up and a lot of goals on deck… and this has been a frustrating winter, to say the least.
So, my question is: How do you handle someone else in your home getting sick?
Do you try to isolate yourselves more frequently? Do you sleep apart? Do you throw caution to the wind and not care? I’d love to know how others handle this, and what your experience has been over the years.

Keeping track of it all…

Feb 17, 2020 05:47 am | Jenny Livingston

Replies: 0
Pills, nebulized meds, inhalers, sinus rinses, more pills, cleaning equipment, blood sugar monitoring, refilling prescriptions, scheduling appointments, more pills, treatments, attending appointments, and oh! — did I mention pills?
The daily CF grind can be exhausting. There’s just so much to do and keep track of! I’ve been living with CF for 32 years, but there are still things I can’t remember to do consistently.
My question is this: is there anything you do to help you keep track of it all? Do you organize meds and put them in special containers? Do you have an app that helps keep things organized? Do you set reminders in your phone? I’d love to hear your tips and tricks!

Does Sickness Make Finding a Valentine Harder?

Feb 17, 2020 05:33 am | Bailey Vincent

Replies: 1
So it is obviously Valentines Day, and I had to ask: How has dealing with disease (either as caretaker, or parent, or person) impacted your love life? Does it still? What’s the hardest challenge you face?
I personally feel like it impacts my self-view very little. But the lack of time- either because in the hospital, or doing treatments, or rushing to appointments- is hard because it’s another layer keeping us busy and apart. My partner doesn’t come to most appointments with me because of his work, so I man much of the ship myself… but I also sort of dig being somewhat autonomous in my self care?
I have a secondary question to ask next week… so stay tuned!
HAPPY VALENTINES DAY!

CF Phase 2 Trials Testing ELX-02 Nears Complete Enrollment, Eloxx Says

Feb 14, 2020 05:29 am | Cystic Fibrosis News Moderator

Replies: 0
Two Phase 2 clinical trials testing the treatment ELX-02 in people with cystic fibrosis are nearing completion, Eloxx Pharmaceuticals announced. Click here to read more.
What do you think about this news?

Feb 13, 2020 12:50 pm | Jenny Livingston

Replies: 0
For the past couple weeks, I’ve been taking antibiotics to treat pneumonia. During that time, I’ve complained about the side effects far more than I’d like to admit.
I recently posted about how my doctor and I were both surprised to discover that I had pneumonia. Based on my symptoms (or, rather, lack of them) we never would have guessed it. Generally, when I’m sick, I’m really sick. Medication side effects seem like a fair trade off when I know I’ll feel so much better afterward. When I’m feeling that sick, I’ll deal with whatever it takes to get feeling well!
But this time I was already feeling fine. I only started feeling poorly after starting the antibiotic. It’s hard for me to come to terms with the fact that I needed this course of treatment when I wasn’t feeling awful to begin with. I think that’s part of why I’m having a harder time with side effects right now! They just seem so unnecessary (even though I know it was important to treat the pneumonia).
Do you find that it’s easier to accept certain things (whether it be medication side effects, being admitted to the hospital, or some other unpleasant thing) when you’re feeling sick? Do you resist or resent treatment when you’re feeling well, even though you know it’s necessary?