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 “risky” are you being?

Jul 28, 2020 04:00 am | Jenny Livingston

Replies: 1

In the beginning of this pandemic, I took quarantine very seriously and took all the recommended precautions. I stayed home, didn’t see anyone outside my household or let others inside my home, sent an extended family member grocery shopping for me, sanitized groceries and mail/packages before bringing them inside – the whole shebang! Also, since my partner is an essential worker and continued to work outside the home, we were being very careful about our interactions. We weren’t kissing or sleeping in the same bed. We even debated having him temporarily live in our camping trailer in the backyard.
As time has gone on, we are still taking things very seriously, but the activities I’m willing to participate in have changed. At some point, I started seeing some of my extended family in town. My partner and I once again share a bed. I’ve done my own grocery shopping several times now. Over the weekend, my daughter and I had a tiny overnight get-away and, today, we even went to the zoo! (Our zoo has special hours set aside for the elderly and high-risk. I was so pleased with the level of precautions that were implemented.)
My question is this: how much “risk” are you taking? What level of social distancing are you practicing? Are you still quarantined or are you going out into the world? What is your comfort level with activities outside the home?

Do You Miss Your Old Life?

Jul 27, 2020 12:15 pm | Bailey Vincent

Replies: 1
I wrote about feeling grateful for “time off” during this socially distanced moment in life… but feel guilty about doing so. Since there is so much fear and turmoil in the world right now, I hate that I’m actually happy to have time to heal and be at home. It feels selfish.
Do you wish life would go back to the way it was at the end of this, or do you hope we keep some of the slower pace?
I am curious how the new pace of life has impacted most of us, and what you will change about your own. Honestly, I really hope that on the other side, I can return back to dance but keep everything else in our life slightly slower. I don’t miss rushing around without having time to eat… coming home late at night… and having a hard time saying “no” to things. If I could, I’d only jump back in to life 50%, and keep the other 50% at a less challenging speed.
What about you?

Self-care in the time of COVID-19

Jul 26, 2020 03:13 am | Jenny Livingston

Replies: 1
I recently asked how you’ve stayed busy during quarantine, and today’s question is similar, but a bit more specific.
As stress, tensions, and my anxiety had ebbed and flowed throughout the progression of this pandemic, I’ve had to become very intentional about my self-care. After a particularly rough week, a conversation with a friend reminded me that I hadn’t been taking that time for myself )which could have contributed to my overall dissatisfaction with life lately).
I’m finding it necessary to intentionally set time aside for self-care, otherwise it’s falling by the wayside. Yesterday and today, I spent some time writing, being with my daughter outdoors, resting, and meditating. I’m already in a better headspace after taking some time to do those things!
What are your self-care tips? Have you found it more difficult to tend to your mental and emotional needs during this time? What is your favorite self-care activity?

Advocacy in action: what would you say?

Jul 24, 2020 07:15 am | Jenny Livingston

Replies: 0
I recently had the opportunity to meet with the Lt. Governor of my state to discuss cystic fibrosis and healthcare. It was a productive conversation in which I truly felt heard and validated. There are two takeaways from our conversation that stuck with me and I hope will be taken into consideration by my representatives.

It feels as if our lives (as individuals with CF) have a price tag on them. If we want to stay alive, we must be able to pay for our incredibly expensive healthcare. If we cannot do that ourselves (and lets be honest, who can afford that?) we rely on insurance. If insurance is inaccessible or denies coverage, we have no more options. In that case, it feels as if we are being told that our lives are not worth that specific dollar amount.
Some of the programs designed to help people with CF actually de-incentivise us from doing things that are deemed “productive” by society. Limits on income and asset amounts present challenges for someone who wants to work. Program guidelines force poverty because, again, healthcare is absolutely essential so if a person must choose between a job they love and access to comprehensive healthcare – most often they’ll choose life saving healthcare. There are changes that could be made that would allow us to maintain benefits while also living our lives and “contributing to society.”

My question for you is this: if you had 10 minutes to talk with a legislator or government representative, what is the most important message you’d hope to impart. What one thing could they do to make your life with CF better?

Bad Day and Ear Aches: Advice?

Jul 23, 2020 10:35 pm | Bailey Vincent

Replies: 1
I am having a bit of a “bad day”. It started with writing about a bad mood on my Instagram yesterday. It then spiraled into important news about my spine (I’d rather have news-news than no news, but it’s still a lot to process), coupled with a quick dental appointment that led to a monstrous earache today. Ouch. I am ouchy and achy and wishing I could wish this ache away. Can you feel the epic pout through the screen?
What do you do for your health when you’re having a bad day? Do you push through or take it slow?
I am normally a “keep pushing” type, but not today! It’s funny how sometimes the little symptoms hit me hardest (when piled on top of one another) more than the actual serious stuff.
What about you?