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?

CFF Compass — a personal story/review

Feb 26, 2020 05:20 am | Jenny Livingston

Replies: 0
“Compass is a personalized service to help you with the insurance, financial, legal, and other issues you are facing. A dedicated, knowledgeable CF Foundation case manager is ready to work with you, one-on-one. This expert guidance is available to anyone with CF, their family, and their care team, regardless of income or insurance status, and is free and confidential.” — CF Foundation website
I’ve heard about Compass. I’ve referred people to Compass probably a dozen times. But I had never personally used Compass until recently and, can I just tell you… I was not disappointed.
I recently had an insurance scare and thought that I might be needing to make some significant changes. I was having a hard time understanding how insurance companies coordinated benefits, what the cost of switching plans might be, and how well my potential new insurance would cover my needs. The world of health insurance can be overwhelming and terrifying.
I called Compass and within minutes, my mind was put at ease. I was told, “we won’t tell you what choice to make, but we can help you gather all the information you need to make a well-informed decision.” And they delivered on that promise!
Thankfully, we figured things out and I won’t be needing to make any changes right now. But I’m so glad I called Compass and received some much-needed help gathering information. If you find yourself in a situation like mine, don’t hesitate to reach out. It was a very helpful and painless experience! I’m incredibly grateful that we have these resources for our community!
Had you previously heard of Compass? Have you ever utilized this service? Have you ever faced scary or complicated changes in health insurance and wished you had someone to help walk you through them?

Steroid Withdrawal Has Me Moving Slowly, but I’m OK with It

Feb 26, 2020 05:17 am | Cystic Fibrosis News Moderator

Replies: 0
Click here read about Brad Dell’s post-steroid withdrawal experience.
Have you experienced steroid withdrawal? How did it affect you?

After Surgery: When Do You Return To Work?

Feb 26, 2020 04:45 am | Bailey Vincent

Replies: 1
Question: How long do you take after surgery to get back to life?
I am just a few days out from sinus surgery, and still don’t feel like myself at all (I actually feel worse currently, before hopefully feeling better). Despite feeling terrible, I have to return to work tonight in some capacity. I often return to work or dancing well before the designated time that doctors say so (in this case, two weeks of minimal moving and weekly debrieding, and then a slow return). I just can’t afford to take the full amount of healing time off.
Does anyone else do this or do you have any recovery experiences or advice to share?

“Normal people sick” and other code words/phrases

Feb 25, 2020 10:30 am | Jenny Livingston

Replies: 4
Today I woke up with a nasty head cold, and in an effort to distinguish today’s symptoms from the ones I normally have, I’ve found myself saying that I’m “normal people sick.”
Everyone I’ve spoken with today has totally understood what that means for me. But if I were to say that to someone outside my CF/chronic illness community, I’m not sure they’d understand. And that got me thinking…. are there certain words or phrases we use, kind of like a code, to describe how we’re feeling without having to go into detail?
“Normal people sick” for me, means that I’m dealing with a virus or other acute illness on top of CF.
“CF sick” means that I’m experiencing an exacerbation. “CF sick” usually leads to a hospital stay.
“I’m hanging in there” is usually accompanied by a forced smile and means that, while I’m probably feeling pretty terribly, life must go on. It might be by a tiny thread, but I am indeed hanging in there.
“Brain fog.” This one is hard to describe to anyone who hasn’t experienced it. But if you’re like me, you read those words and can almost start to feel the fog rolling in.
“I’m going to bed” rarely means that I’ll actually be sleeping.
Similarly, in our house “resting” is synonymous with ” “I won’t be sleeping, but my body needs a break.”
Do you use any words or phrases that have a deeper meaning? Do people outside your circle know what these things mean, or is it a code that only a few understand?