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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?

I Keep Forgetting CF Is Invisible

Feb 04, 2020 02:40 am | Cystic Fibrosis News Moderator

Replies: 0
Cystic fibrosis is part of columnist Wendy Caroline’s identity. It’s so inextricable from who she is that Wendy forgets CF is an invisible illness. Click here to read more from Wendy.
Have you ever felt like Wendy? Do you ever forget you have CF?

MCM: Vinny

Feb 03, 2020 01:37 pm | Jenny Livingston

Replies: 0
We’re back with Vinny as our MCM! @vincenz99 is 30 years old and from NY. Here are a few things that’re important to his story with CF.

I was diagnosed with CF at 6 months old, soon after the discovery of the CF gene. Luckily, my family didn’t let this grim diagnosis & unknown future keep me from living the life of a normal kid. I was always active; played sports; and loved all night video game sessions. I was lucky enough to be a relatively, healthy, normal kid for the majority of my childhood and teenage years. I had aspirations of becoming an artist or an actor, a teacher, then an obstetrician. You can imagine the looks on the faces of my family and friends when I became an accountant (I hated math class growing up!).

As a young adult, there were times when I found myself battling mild depression. The Internet can expose the grim realities of this disease and create a firestorm of “what if” scenarios. I wanted to live a full life; I wanted to have a family; I wanted to see this disease cured. Thankfully with the support of my parents, family, and friends, I have learned to not sweat the small stuff and to live each day to the fullest. Mental health and CF go hand in hand: never underestimate the power of a positive outlook.

Starting Trikafta was easily one of the best days of my life, so far. This drug is nothing short of a miracle. My weight and functions have skyrocketed; my outlook on life has improved; and for once, I never cough. Thanks to Trikafta, I am slowly getting back into my gym regime and hope to run a 5k marathon in the near future. I am also back into hobbies that I haven’t been able to do in quite some time — kickboxing, hockey, cycling, and lifting. I can also sing (badly) in the car now without hacking up a lung in the process. With my new lease on life, I want to continue raising awareness for CF and the wonders of this drug. I want every patient who can benefit from this drug to get it ASAP! In non-CF news, I love binging movies & television on my free time; I am an avid NHL fan; I speak multiple languages; I love going to the gym; and I love to reminisce about 90s Nickelodeon.
Question: CF doesn’t define us. What is a hobby you enjoy that helps you live with CF?

Trikafta guilt

Feb 03, 2020 01:21 pm | Jenny Livingston

Replies: 0
I’ve talked before about the guilt I feel for having access to a “miracle drug” (Trikafta) when others, including some of my very good friends, don’t. Whether it’s due to genetics, geography or insurance issues, I feel deeply for those who are watching from a distance — seeing others benefit from a drug they’re unable to take.
It causes some complex emotions. As I’ve started experiencing some benefits myself, I haven’t known if sharing them is the right thing to do. I’m generally an open book. Too open at times, if you ask my partner. But it’s difficult for me to share my successes when I know others don’t have the same opportunities. Why am I experiencing so much guilt and inner conflict?
If you’re on Trikafta, do you ever feel guilty for having access when others don’t? If you’ve benefitted from Trikafta, do you feel comfortable sharing that success openly?
And if you’re someone who is unable to take it, how do you feel about hearing these stories? Do you enjoy them, or are they painful to hear?
I’d really like to know what you think!

Commiseration Monday: The Woes of Steroids

Feb 03, 2020 12:55 pm | Bailey Vincent

Replies: 1
I am back on oral Prednisone and have no problem complaining about it. I’m fairly jaded in that I’m on a host of meds that I don’t feel any major side effects with and never think twice about, but Prednisone is a different story. I get sweaty. Have a hard time sleeping (even when I take it in the morning). My skin breaks out (even after I’m off of it). My face swells up (only if I’m on it for long periods of time). And I feel super short tempered, though I try not to be. In short: I feel like a slimier, grouchier version of my usual self.
I often think that the key to living with any ailment is to not think about. The less I focus on what makes me “different”, the less I notice symptoms or side effects or things that “should” hold me back. Our mind matters so dang much. But sometimes- as with wheezy weak moments on The Pred- I feel like no amount of self control can control how grumpy and hot I feel.
Even worse: the rest of me feels BETTER. My dancing feels less laborious. My energy goes up. My body aches less. As a dancer, I realize what I’m “missing” most of the time. But as a cool-tempered, laid-back human, I realize I’m not myself.
I always wonder: Which matters more? I feel better, without a doubt. But is it worth the side effects?
How long have you been on Prednisone before (I know for many transplanters it’s indefinitely) and at what dosage does it impact you most?

Experimental CF Compound ETX001 Shows Promise in Preclinical Studies

Feb 03, 2020 03:39 am | Cystic Fibrosis News Moderator

Replies: 0
Enterprise’s investigational ETX001 shows promise in a preclinical study and could be a potential therapy for all CF patients, regardless of CFTR mutation. Read more about it here.
What are your thoughts on this news?

Do You Ever Feel Like Meds Change Your Personality?

Feb 01, 2020 11:36 pm | Bailey Vincent

Replies: 1

I felt completely lost this last hospitalization. Due to what was going on with my head (I had a spinal headache), I was on a cocktail of meds the first few days that really impacted me cognitively. I felt slower… my eyes felt blurry… my thumbs felt slow when I tried to type or text my friends. I felt completely cut off from “myself”, which is even scarier sometimes when you’re deaf (which, surprisingly, a lot of CFers can develop hearing loss), and led to a lot of anxiety. My eyes and functioning thumbs are my connection to the world. I can’t just call someone up when texting doesn’t work, or listen to the TV when I’m trying to take my mind off things.
I shared a bit about this in a recent Instagram post (with an ASL vlog to match), but I was wondering: Has anyone else ever experienced a reaction to medications that made them feel disconnected, anxious or different? How did it impact you after?
I am still sort of shaken up by the whole experience, and worrying it will one day happen again. I realized this serves no one… but it’s hard to not reflect back with both gratitude and fear.

Numbers aren’t everything

Jan 31, 2020 05:22 am | Jenny Livingston

Replies: 0
In my journey with CF, I’ve learned (and re-learned) that numbers are just part of this complex CF puzzle. While we like to focus on the numbers and they are indeed significant, it’s important to remember that there’s more to the story.
Yesterday I had clinic and was elated to discover that my lung function is currently the highest it’s been since 2014. It was a great clinic visit! Just as a precaution, I had a chest X-ray due to some lung pain I’ve been experiencing off and on. This morning, my doctor called to let me know that the results of that x-ray. I have pneumonia in my left lung.
My mind was blown! How can I have great numbers while I’m actively fighting pneumonia? It doesn’t make sense to me! This goes to show that while they’re a great tool in helping us understand what’s going on, numbers truly aren’t everything!
Do your numbers tend to reflect how you’re actually feeling? Have you had an experience where your numbers and your symptoms don’t seem to match up?

How do you feel about scars?

Jan 31, 2020 04:57 am | Jenny Livingston

Replies: 2
I don’t have many scars, but those that I do tend to garner quite a bit of attention. The scar on my chest where my port was placed (and subsequently removed) is rather prominent and I get questions about it frequently.
“I was shot,” is probably my favorite response because the reaction I get is priceless. But I’m quick to take that back and tell the truth. I don’t have a problem talking about CF and the reasons my body carries these scars. I’ve never felt self conscious or uncomfortable with them. In fact, I actually like that it gives me a chance to talk about CF and possibly spread some awareness.
What about you? Do you have CF related scars? How does it make you feel when people ask about them?

Help: Parenting Is Kicking My Sick Butt

Jan 31, 2020 04:52 am | Bailey Vincent

Replies: 1
I have had a terrible parenting week. My teenager is being a teenager and I literally feel like I’m going to crack everyday so far. It’s so hard knowing I only just got unplugged from IVs, and I have so much work to do… yet, most of my “free moments” for treatments or remembering to take meds have been spent doing full time, emotionally draining, teenage maintenance. (I homeschool, by the way, for additional context)
My kids are the most important thing in the world to me, so I wouldn’t have it any other way… But, sometimes, I can see a direct correlate between my health and my mothering schedule. I’m sure even healthy parents can see the toll of parenthing schedules on their body and mind, so I can’t help but wonder: IS it even possible to balance parenting and being a patient? Or is it a myth we tell ourselves but never talk about freely enough?