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?

The thing I don’t REALLY want to talk about, but feel like I should…

Mar 03, 2020 12:00 am | Jenny Livingston

Replies: 2
There’s something on most of our minds right now that I’m torn between wanting to discuss and wanting to hide from.
COVID-19/Coronavirus.
If you’ve been following along, you know that there are confirmed cases (including a couple fatalities) here in the United States. What does this mean for both our CF community and society as a whole? I’m admittedly not sure, but here are a few sources that I have found helpful:
“https://www.pharmaceutical-technology.com/special-focus/covid-19/coronavirus-covid-19-outbreak-latest-information-news-and-updates/
Apple Podcast:
https://podcasts.apple.com/us/podcast/this-podcast-will-kill-you/id1299915173?i=1000464558660&fbclid=IwAR04pO3s3anyaZwLeZ_eq29RuA6z62n1H9wNtQm9r8YzrJiEGjGzSm8lXS4
Gunnar Esiason blog:
http://www.gunnaresiason.com/coronavirus-covid-19-and-some-of-the-ethical-questions-facing-the-cystic-fibrosis-community/
New York Times article:
https://www.nytimes.com/article/what-is-coronavirus.html?
CDC Article:
https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html
I think it’s important to gather as much information as possible, while being careful to avoid sensationalized news and fear-mongering. Also, if you have specific questions or concerns, call your CF clinic. This is definitely on their minds as well!
What are your thoughts on COVID-19? Are you doing anything differently to prepare for a potential outbreak in your area? Do you think the fear surrounding COVID-19 is warranted? How can we support one another during this time?
I’d love to have a calm, well-informed chat about this!

This topic was modified 22 hours, 1 minute ago by Jenny Livingston.
This topic was modified 21 hours, 49 minutes ago by Jenny Livingston.
This topic was modified 21 hours, 49 minutes ago by Jenny Livingston.
This topic was modified 15 hours, 18 minutes ago by Jenny Livingston.

Germ Season: Who’s Worried?

Mar 02, 2020 05:58 am | Bailey Vincent

Replies: 0
I am not normally a germaphobe. In fact (because I’m a mother, and work with kids, and my husband works with kids), I’m pretty laid-back about this worry, since that’s just how our life is mapped out currently and I can’t avoid humans completely. I try to use all the common-sense precautions whenever possible, but also try to not overly worry or stress.
However, with cold and flu season going around, and now (as Jenny mentioned on the forum) the coronavirus concerns… I can’t help but wonder: How do I do better about germ precaution?
Question: What are your top tips for avoiding germs whenever possible?

Majority of Home Nebulizers Used by CF Children Contaminated with Microorganisms, Study Finds

Mar 01, 2020 07:48 am | Cystic Fibrosis News Moderator

Replies: 1
A majority of home nebulizers used by CF children were found in a study to have high levels of contamination, posing serious health risks for patients. Read more here.
What do you think of this news?

Balancing Life: When Do You Say No?

Feb 29, 2020 10:19 pm | Bailey Vincent

Replies: 1
I am working extremely long hours this weekend and all next week. Because I had surgery last week and had to take time off, I can’t afford to let more people down this time around. Today, I’m at dance from 12 until 10 PM, with no major breaks (I have to eat snacks while I’m teaching and talking). Tomorrow,, I work even longer hours, and the same goes for Sunday. If I could go back in time, I would say “no” to more things, but essentially, I had to help important people who help me all the time.
Last night, I had an utter panic attack about how I could possibly keep up with bodily needs (just going to the bathroom, let alone doing the post-surgery sterile sinus rinses, nebs, or anything else), and I came up with no answers. I simply can’t. When things become too busy, I always feel super panicked about the inevitable health fallout that might happen.
It’s not that I have a hard time saying “no” or canceling plans or letting people down… it’s that I have to do it so often, that then I try to “make up for it” with a frantic few days on the other side.
Does anyone else experience this constant push and pull, or is it just me? How do you balance it all?

Myths and misconceptions

Feb 28, 2020 04:05 am | Jenny Livingston

Replies: 0
As is the case with many diseases, there are a lot of myths and misconceptions about cystic fibrosis. I find this especially funny/irritating when those misconceptions are perpetuated in the media (think Grey’s Anatomy and things of the like).
Some of these myths seem to be based on outdated medical information, some are based on inaccurate media representation, but most of the misconceptions I’ve come across are the result of ignorance. Not willful ignorance, just simply not knowing.
Some myths and misconceptions I’ve come across include:
CF is more common in males than females.
Our coughs are contagious.
CF only affects the lungs.
CF is “just like asthma.”
We need to stop smoking or “change brands.”
CF is strictly a childhood disease.
Have you encountered myths and misconceptions like this? How do you address this kind of misinformation? What is the strangest or most concerning myth/misconception you’ve heard?

Prednisone Problems: Who Can Relate?

Feb 27, 2020 11:05 am | Bailey Vincent

Replies: 0
After being off Prednisone about a week, I am back on again because I’m feeling so rotten after this latest sinus surgery. As I’ve mentioned in the past, Prednisone definitely makes me breakout (why oh why?!?), feel sweaty and “rage-ful”, and eventually have a healthy amount of fluff-face. I honestly don’t even care as much about the round face as I do the painful, broken-out complexion… especially because so few others seem to post about this side effect. I feel a like a teenager going through a hormonal crisis!
Reading about how Brad Dell, one of the columnists here, dealt with steroid withdrawal also gave me room for pause because… Wow, there are so many downsides to a medication that brings me so much relief!
My question today is: What medication do you hate the most but feel the best taking?
(Also, on a selfish and shallow side, does anyone have any tips for dealing with steroids? My kids talk about how grumpy I can be, and I feel so hot-tempered and hot-hot- sweaty and stressy- so much of the time. Tips, tricks or just general commiseration would be so appreciated!)