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?

MCM: Joe

Jan 27, 2020 09:26 am | Jenny Livingston

Replies: 0

Hey y’all! We’re so thankful that Joe is our MCM. @joe_komitor is 23 years old and is from NY! Here are three things important to HIS story with CF (be sure to answer his Q in the comments!)⠀
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I was diagnosed with CF at 18 months old in 1998. Growing up I had a relatively normal childhood and was really active with sports. I was very fortunate health wise during my elementary and middle school years, only being hospitalized once for a pulmonary exacerbation. My mom made sure (and still does) that I know how important compliance to my regiment truly is.⠀
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About 6 years ago, around my 17th birthday I had my first hospitalization in over a decade. Since then it has been a progressive decline with over 2 dozen picc lines due to either exacerbations or bacteria colonizing inside of me. Things really started to downward spiral when I was a junior in college. I began to distance myself both emotionally and physically from people, because I felt as if no one knew what I was going through. In the spring of 2018 I had to leave during the semester, because I was too sick to continue. I was familiar with being sick but this time it was different than any other time. After this stint with IV’s, it took me a few months to physically feel somewhat okay but it was eye opening.⠀
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It made me realize and more than anything, appreciate how precious life is. It lit a fire beneath me to accomplish as much as I can while I am still here. Somehow, that exacerbation in the spring of 2018 allowed me to see the light at the end of the tunnel and it has allowed me to keep moving forward. On December 8th, 2019 I started trikafta and my lung function has gone up double digits, looks the the fire will keep burning! ⠀
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Q: CF has taught me to be grateful for those in my life, but what has CF taught you?

People with Cystic Fibrosis Shouldn’t Overlook Importance of Sleep, Experts Say

Jan 27, 2020 05:45 am | Cystic Fibrosis News Moderator

Replies: 0
Sleep hygiene is extremely important for people with cystic fibrosis, more than half of whom complain of sleep problems, experts say. Click here to learn more about this topic.
Do you get enough sleep? Why or why not? What happens when you don’t get enough sleep?

CF Warrior — what does that mean?

Jan 26, 2020 05:39 am | Jenny Livingston

Replies: 1

“Warrior” is a word used frequently in the CF community and chronic illness community at large. And when I look at the individuals and families fighting this disease, warrior seems to be a very fitting term. The battles fought against this disease are strenuous, harrowing and all to often, entirely unfair.
But even though I fight many of the same battles, I don’t think of myself as a warrior. In fact, it makes me a little uncomfortable when someone uses that term to describe me. There is a dissonance there. I don’t feel like a warrior. I don’t always handle this disease gracefully and, oftentimes, I don’t feel very strong.
Maybe that’s precisely what it means to be a warrior — to keep fighting even when you’re scared or weak.
What are your thoughts on all this? Do you consider yourself a CF warrior? If you’re like me and the term makes you uncomfortable, why do you think that is?

Issues with mail order pharmacies

Jan 24, 2020 12:19 pm | Jenny Livingston

Replies: 0
I’ve been spoiled when it comes to pharmacies and getting my specialty meds. For the last couple years, I’ve been able to fill my prescriptions at a specialty pharmacy that works directly with my hospital/care team. I’ve gotten a call from the pharmacy tech, placed my order, and had my meds magically show up on my doorstep the next day.
Due to insurance changes (that I wasn’t even aware would be taking place, thanks to a lack of communication from my insurance company) I had to switch pharmacies at the beginning of the year. Which means that I’ve been thrown back into the world of mail order pharmacies…. yuck! I’ve already gotten the run around from two pharmacies, had prescriptions mysteriously disappear, and had medications temporarily lost in the mail (thankfully, it was delivered a day later).
I’m still spoiled in that the pharmacy tech at my center has been incredibly helpful during this transition. But it’s a frustrating process that I’m sure many of you have experienced as well.
How do you get your specialty meds filled? Have you, like me, had issues with mail order pharmacies?

Help: I Am an Anti-Germaphobe Who’s Becoming a Germaphobe

Jan 24, 2020 05:12 am | Bailey Vincent

Replies: 0
I have never been a “germaphobe”, despite our predisposition for infections and sickness. I always thought that stressing about what we can’t control only causes more stress. Sometimes I’m even a little negligent in caring because I don’t want to be ‘that person’ who’s always stressed about germs and her health, when the world spins on without me.
I have two kids (if you didn’t know, kids be disgusting), a husband who works in the school system, and I teach dance most nights. Still, with all the flu and strep that’s going around my area right now, I can’t help but feel super vulnerable and nervous about catching something on top of my many somethings… especially because I’m on IVs and still getting “back on my feet” (metaphorically speaking).
This weekend I return to my job(s)- working very long dance hours, surrounded by large groups of people, concluding with a special black-tie gala for my dance company. Basically: so so so many humans.
I normally wouldn’t be nervous, but this time… I am. And I’m sort of embarrassed about that, because it’s so against my “laid back” attempts at personality and wellness.
Do you ever find that your reactions change over time? Or that you become anxious about things you wouldn’t have in the past?

Gene Variations May Explain Resistance to Lung Infections in Some CF Patients, Study Says

Jan 24, 2020 04:43 am | Cystic Fibrosis News Moderator

Replies: 0
A study says variations that lower expression levels of the RNF5 gene may protect some with CF from frequent lung infections by stabilizing CFTR protein. Click here to read more.
What do you think about this study and its findings?

How Do You Handle Criticism About Your Health?

Jan 24, 2020 02:10 am | Bailey Vincent

Replies: 3

QUESTION: How do you handle criticism about your health and body?
I wrote a column discussing my anxiety with encountering trolls online, and can’t help but wonder… how does one become a troll? Do trolls even know they’re trolls?
In my case, the most negative people are often those that are also sick, despite assuming we’d be the most compassionate. We should know, above everyone else, that no one experiences sickness or its impacts in the same way. And, frankly, no one should.
So why do we all criticize one another for being even the slightest bit different? What has that ever achieved in the history of achievements?
Even so, we are all entitled to our opinion. Heck, if someone said I’m a terrible writer, or bad dancer, or had questionable bone structure, or use too many ellipses… I would understand their right to these feelings. However, when someone attacks another for their actual biology- their genetic material and mass- I don’t really get the point?
Can I take that critique and fix my DNA? Nope. Can I make you feel better about what I can’t control (my body), which in no way impacts you and your body? Not really.
I would much rather be disliked for the great many things I need to work on and improve (ellipses not withstanding), than for the matter that doesn’t really matter to most.
What about you?

Do You Let Kids Be Involved in Treatments?

Jan 23, 2020 12:11 pm | Bailey Vincent

Replies: 0
I posted a video of my 10-year-old daughter and I preparing my home IVS on an ordinary day (mostly because I was trying to share her adorable words in the caption), and was wondering: How do you guys feel about this?
I used to hide everything from my kids in the past. Now, I just hide anything that might cause them distress (you’ll never catch me moaning in pancreatitis pain around them), but try to empower them for the stuff that could feel routine if I don’t make a big deal out of it. In turn, it’s not really a big deal for them. Also, my youngest wants to be a doctor one day, so she is extremely bossy and elated to be involved, and have different “jobs” to do.
What is your tactic in handling medical supplies around your kids? Or, if you’re a parent of a child with CF, do you try to empower them in their own care?