Cystic Fibrosis News Today Weekly Forum Digest

Join the discussion! See below for the latest topics and conversations about CF taking place in our forums. Your voice is needed!

New to our forums? Register here.

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?

Adaptability: Expecting the unexpected

Aug 25, 2020 07:17 am | Jenny Livingston

Replies: 3
I’ve lived with CF long enough to know that the only certain thing about it is uncertainty. There have been countless times in my life that CF has thrown a wrench into even the best laid plans. As a child, I missed weeks of school at a time. As an adult, I was nearly fired from a job due to my “inconsistency.” As a college student, I took final exams from a hospital bed — twice! As a parent, I’ve missed school programs and other important events in her life (thankfully, she’s had other supportive adults in her life who consistently show up for her when I can’t).
The point is, CF adds a tremendous amount of uncertainty to our lives. I’ve learned to roll with the punches and adapt to new, sometimes difficult or incredibly uncomfortable, situations.
Right now, I’m navigating a significant change in plans regarding my daughter’s schooling. We thought our minds were set. We thought we’d made the best decision for our family. But as time goes on and we’re given new information, those plans are changing. I’m struggling with the uncertainty of it all, while also realizing that ultimately, we’re going to be okay. We’ve handled tricky situations before. We’ve got this! I think that CF is at least partially to thank for my ability to handle tricky life changes because it’s given me so much practice!
Have your plans ever been derailed by CF? (If so, I’d love to hear about it!) How has the unpredictability of this disease affected your life? How do you adapt to big or sudden life changes?

Fights: What Do You Battle The Most?

Aug 25, 2020 05:27 am | Bailey Vincent

Replies: 1
In one word, what topic do you fight about with friends or family the most regarding health?
OR for carers: What topic stresses you out the most with those that you love?)
For me it has to be GUILT. I feel guilty when I need to take a break… when I can’t keep up with everyone… when I advocate for myself… when I don’t advocate for myself… and on and on. I find a way to feel guilty for nearly everything- though I “know better”- and sometimes (without meaning to) family and friends express resentment in their own ways too. Simply telling someone to not feel guilty is never enough, of course, we have to actively work against it all the time (whether or not we invited the shame).
I feel it the most when traveling on another’s timeline. Family events, road trips, and social outings can be tough, because I have to stop to go to the bathroom extra or can’t walk as fast or as far, and so on. (This is not always a problem, of course, but when it is, I have a hard time reminding myself it’s temporary and/or out of my control.)
What about you?

Do your symptoms change with the weather/seasons?

Aug 24, 2020 06:58 am | Jenny Livingston

Replies: 0
Yesterday my family and I spent some time in the mountains where the air was crisp and cool. There was evidence of autumn all around us in the form of bright orange and red leaves. It’ll still be a while before there are cooler temperatures in the valley where I live, but I find myself so looking forward to my favorite season — fall.
But even as I dream about all the things I love about fall, I start dreading the symptoms that come with cooler weather. I’m already beginning to have an allergy flare-up (seasonal allergies are fairly new to me and I’m still trying to figure out which pollens bother me). When the temperature really dips, I’ll also begin having more issues with arthritis. Not to mention the fact that cold and flu season is on it’s way!
Over the years, I’ve realized that there is definitely a correlation between the seasons and certain symptoms of mine. Do you experience this as well? I’ve heard the phrase that things “change like the weather” but do your physical symptoms also change with the weather? Do you find yourself feeling better or worse during a particular season?

Has Your Health Changed Your Politics?

Aug 23, 2020 10:27 pm | Bailey Vincent

Replies: 2
Someone commented on my Instagram account today with a political party hashtag, even though it truly held no relevance to what I had posted. I was fairly perplexed (what did I write that warranted this out of context comment?), but it also made me wonder…
Do you feel that your health has influenced your political beliefs?
I don’t ask this to start a heated debate or increase party warfare, but to respectfully wonder how healthcare concerns and social hardships have potentially influenced your voting over the years. Perhaps they have not (Maybe it was your family and what you grew up with? Or maybe you avoid politics all together?), or perhaps your body has enormously impacted your beliefs.
I would love to know: Does healthcare matter for you when you vote?

Your Disease Process: Which Organ Hurts Most

Aug 23, 2020 10:14 pm | Bailey Vincent

Replies: 13
If you had pick one organ that’s impacted the most by your disease process… Which is it?
And, in doing so, which doctors feel the most important members of your team?
Mine has undoubtedly been my stomach (as I wrote about recently on Instagram with some less-than-flattering photo memories), or- perhaps more specifically- my whole digestive system. I’ve had more intestinal surgeries than I can count, and am down a colon, large intestine, gallbladder, and beyond.
Because of this, I was extremely close with my colo-rectal surgeon and my GI team… until the former retired, and the latter moved to another specialty. I was crushed. And, though I’ve been working to find suitable replacements and carry on, it doesn’t feel “the same” just yet because I truly trusted them so much.
My new CF clinic has been amazing in terms of lung care, medicine maintenance, and amazing holistic mind-body treatment as a whole (I truly feel so lucky to be with them), but any time biliary backfires or major GI malfunctions happen… I’m still supposed to see those specialists.
I have more thoughts on this tomorrow, but for now, my question is: Which organ hits you hardest, and how many specialists do you see?

Workouts: How Do You Prioritize Stamina?

Aug 22, 2020 03:26 am | Bailey Vincent

Replies: 1
Yesterday one of our moderators Jenny posted about what lung clearance techniques work for us individually, and it brought up my own anxieties about losing stamina now that I’m not able to dance.
In the last few weeks, I can feel myself getting out of breath even just by talking, and it totally freaks me out because I don’t feel lung or sinus exacerbations are too blame this time… I think it’s me!
I hate being “stuck still” because I’ve always found so much health benefit from movement (even when it hurts), but right now I can’t push through this particular injury… so my stamina is definitely falling. I’ve tried to consider logical options- biking, water, low impact walking- but since sitting and just moving around to take a bath hurts, you can imagine why those don’t seem as easy as they should.
Have you ever struggled to prioritize stamina and cardio health when immobilized? What tactics have you tried?
Basically, I’d love to talk workout and health routines, and see what your journey has been throughout the years?

What is your preferred method of airway clearance?

Aug 21, 2020 07:09 am | Jenny Livingston

Replies: 2
Vest.
Pep.
Manual CPT.
MetaNeb.
Huff coughing.
Autogenic drainage.
Active cycle of breathing.
Airway oscillating devices.
These are some methods of airway clearance that I’ve either tried or heard of. I’m a Vest and Pep girl myself, but I know that we all have a preferred way of doing things.
What method of airway clearance is your favorite? How many treatment sessions do you do each day? What is the average length of total time you spend on treatments each day?

Living numbers-free (for now)

Aug 20, 2020 02:43 pm | Jenny Livingston

Replies: 2
Yesterday on Intagram, I shared some thoughts about PFTs and numbers, particularly during this pandemic. Due to COVID restrictions, I haven’t done PFTs since January — that’s 7 months with no idea what my numbers are! It comes as a bit of a surprise (to myself) that I’ve been okay with this. There’s actually been a sense of liberation in focusing solely on my symptoms and how I’m feeling rather than worrying about numbers.
What about you? Have you done PFTs in clinic during this unprecedented time? Do you have a home spirometer? Or are you (happily or not-so-happily) living numbers-free for now?