Cystic Fibrosis News Today Weekly Forum Digest

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?

Changing Your Lung Clearance Routine

Sep 15, 2020 01:09 am | Bailey Vincent

Replies: 1

My clearance routine has changed a lot in the last few weeks. Because of spine pain (surgery is 3 weeks away, so I’m literally waiting with bated breath!), I can’t dance, do my vest, or even cough heartily. I’ve been worried this might lead to a chest infection or mucus murkiness, so dropped a sputum culture at my clinic a few days ago and am awaiting results.

I can tell my lungs aren’t happy from all the immobility, but my pain response is fighting against coughing as well… So it’s a weird battle for sure!

Have you ever been unable to do your clearance routine? Have you had to adapt it completely, now or in the past?

I’d love to know how your routine has changed recently, and what you’ve done to accommodate your body’s many demands!

Products and Packing: Essentials?

Sep 14, 2020 04:26 pm | Bailey Vincent

Replies: 2

Yesterday I wrote about the daydream of designing a CF clothing line, and this made me think even more about happy rituals and comforting essentials.

If you could only use three products everyday, what would they be?

The way in which we take care of our skin, body and soul can impact how we feel overall (and also, it’s fun to talk about).

Let’s assume- for the sake of argument- that you already have access to toothpaste/toothbrush and deodorant… What next? What makes you feel better overall?

I know I personally feel like a new woman when I can wash my face off after a surgery or have something nice to smell throughout the day. I’d say that micellar water/cotton pads (for cleaning when you can’t get near a sink), a solid perfume that is comforting but doesn’t inflame airways (I’m addicted to one called I’m Home from Lush that my sister gave me, if only it weren’t so expensive), and a moisturizer to keep my skin hydrated.

Your turn!

Shopping around?

Sep 14, 2020 04:23 pm | Jenny Livingston

Replies: 2

I recently read (in a Facebook group I belong to) that a woman was dissatisfied with her CF center, so she was actively “shopping around.”

I’ve been with my CF team for my entire adult life, and truly, I’ve never had the desire to look elsewhere. In addition to that, my CF center is the only accredited center with a several hour drive from my home (it’s about 2.5 hours to drive one way). I suppose I’ve been lucky to be so satisfied with my care that I’ve never felt the need to shop around.

What about you? Have you received care from multiple CF teams either by choice or necessity (ie: moving out of state). If you’ve “shopped around” in the past, how did you know when you found the right team? What has your experience been with care at different centers? 

CF Clothing Line: What Would You Design?

Sep 12, 2020 03:56 am | Bailey Vincent

Replies: 1

Here’s a silly question: If you could invent one piece of clothing to benefit you while in the hospital (or as a CF patient), what would it be?

I’m always day dreaming about this. It’s a dream of mine to create a sick/tube/patient friendly clothing line that can literally go from bed… to day… to dance (movement friendly)… and back again. I know exactly what it would like, what would make it different from similar concepts, and why it’s needed. I guess, in a way, it would make an ideal pandemic clothing line, too?

I do NOT dress fashionably when hospitalized, but I DO change out of a hospital gown as quickly as possible for psychological reasons (always makes me feel better).

What about you?

CF Camp Memories

Sep 11, 2020 06:05 am | Jenny Livingston

Replies: 3

Some of my favorite memories from childhood include my time spent at CF Camp. Before the dangers of cross infection were known, children with CF and their siblings were sent to sleep away camps in the summer. Growing up, I thought this was something specific to the area we lived (San Diego) but as I got older, I learned that these camps were pretty widespread.

The camp my siblings and I attended was called Camp Pillfeather. We’d stay in cabins with campers in our age groups — sharing bunk beds, getting manual CPT, and nebulizing our meds in the same room. Some of our counselors had CF as well; some were family members of a person with CF. Before each meal, the “pill bell” rang loudly, summoning campers to the cafeteria where we’d line up to get our pills, handed out by nurses and other healthcare providers. There were crafts, fishing trips, swimming pools, camp songs, costume contests, dances, and early morning camp-wide games of Simon Says.

It was truly one of the coolest and most fun experiences! Our camp was shut down in 1994 when the risks of people with CF spending time together were becoming more well-known. I’ve heard that some of these camps continued into the 2000’s! While I’m glad that we now understand cross infection and take measures to prevent it, I will forever be glad to have grown up in a time when things like CF Camp existed!

Did you ever attend a CF camp? If so, what are some of your favorite camp memories? If you’re a CF parent or person with CF born after the early 2000’s, the idea of having dozens of people with CF gathered together probably seems so foreign and perhaps even scary. What are you thoughts about CF camps? 

I was able to find this video yearbook on YouTube (which includes footage of both my sisters!) from Camp Pillfeather in 1989.