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?

Trikafta update

Jul 13, 2020 06:44 pm | Jenny Livingston

Replies: 4

During my hiatus from the forums, I shared an update on Instagram that I wanted to quickly share here as well.
I started Trikafta in November, near the end of a two week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling overall. I was NOT one of those people. The changes I experienced were slower and more subtle. I began feeling like I was disappointing people when they’d ask how I was feeling because I simply didn’t have much to report.
My biggest “wow” moment happened when, after two months on Trikafta, I was sledding with my extended family and ran up a hill without thinking twice about it. I don’t run ever, but especially not uphill!
Now, more than six months into this journey, I still can’t tell you when certain things happened since the changes have been so gradual, but I can tell you that my body has indeed transformed.
For one, I don’t cough anymore. It’s the most bizarre thing! Something that has been so normal for my entire life is now just…. gone. I saw a roughly 8% increase in lung function, giving me my highest PFTs since 2014. I rarely cough up any mucus (I was unable to provide a sputum culture for the second time in my entire adult life at my last clinic visit). My treatment routine hasn’t changed. I’m still doing them as frequently as I was previously, and I haven’t stopped any of my medications.
My digestion has improved significantly, and I’ve gone from needing 5 Creon with meals to needing just 2.
I’m not sure many people understand how painful CF can be on a daily basis. Lungs, joints, stomach, sinuses, overworked muscles — something is always hurting! But I now have more pain free days than I’ve had in years.
This isn’t even a complete list of the changes and benefits I’ve experienced. Most days, I still have a hard time wrapping my head around it all to be honest.
Every single day, I am amazed.
Every single day, I remain hopeful.
Every single day, I am grateful.

Do You Hide Your Scars?

Jul 13, 2020 11:54 am | Bailey Vincent

Replies: 0

I have a weird relationship with certain items of clothing. I just posted about a new pair of leggings I tried on my Instagram, and how deeply insecure I feel in them. Some of this is because I only like to show scars and tubes in certain styles (my “safety items”), and some is because I hate clothing that squeezes my stomach.
I ended up giving the leggings to my daughter, who has been wearing them nonstop and they look amazing. I might even buy her a couple more pairs because she loves the brand so much now.
So… Why do I think she looks great in them but I don’t?
I’d love to know if anyone else struggles with this when getting dressed?

Bizarre injuries? Crazy medical stories? I want to hear them!

Jul 13, 2020 07:30 am | Jenny Livingston

Replies: 0

On Instagram over the weekend, I rehashed the story of a freak accident that took place 10 years ago. It’s a strange story involving a lawnmower, Home Depot, my ex-husband, and a severed Achilles tendon. The months of recovery that followed were some of the most difficult of my life.
A doctor once told me that I have a “tendency for the bizarre” and the unusual things that happen aren’t always CF related. Bizarre and sometimes comical circumstances like “the lawnmower incident” aren’t entirely uncommon for me!
Do you also have a tendency for the bizarre? I’d love to hear your craziest injury, medical, or hospital stories.

COVID-19 Source of Anxiety for Women With CF Children, Survey Finds

Jul 11, 2020 05:37 am | Cystic Fibrosis News Moderator

Replies: 0

Women caring for their children with cystic fibrosis express greater anxiety related to COVID-19 than the young patients themselves, a survey found. Read the full story here.
Do these findings surprise you? Why or why not?

Telehealth in the time of COVID

Jul 10, 2020 09:55 am | Jenny Livingston

Replies: 0

I recently had my first telehealth CF clinic appointment. To be entirely honest, I didn’t have high hopes or expectations for it. I simply didn’t see how an appointment over the phone could come close to the level of care I receive in clinic (not to mention that PFTs were out of the question).
As great as my team is, I just didn’t imagine my telehealth appointment being a very productive or helpful experience.
I’m happy to report, however, that my appointment went incredibly well! My doctor was very thorough and was able to identify things that we could be addressing at home. I was able to speak with my pharmacist, my social worker, a respiratory therapist, and my nurse coordinator — just like I would in clinic.
I’ve heard from some people that they almost prefer telehealth and they’d like to continue utilizing that option when we emerge on the other side of this pandemic. Personally, I think I’ll still prefer in-person visits when they are safe to attend, but I no longer have any concerns about using telehealth in the meantime.
What are your thoughts about telehealth? What are the pros and cons in your opinion? Will you continue utilizing telehealth after this pandemic if given the option?

What’s Your Caretaker Experience?

Jul 10, 2020 05:15 am | Bailey Vincent

Replies: 1

Have you ever had to be a caretaker?
My partner has had two oral surgeries in the last two weeks and I’ve been a complete nut about taking care of him. I’ve lost sleep. I made him a schedule of meds and hung it on the fridge. I’m tracking his progress more diligently than either of us have ever thought about my own antibiotics or treatments or surgeries (lol).
I posted a video on my Instagram about how much appreciation I have for caretakers… but I was wondering how many patients have had to be both?

Let’s Talk Mental Health….

Jul 10, 2020 05:05 am | Bailey Vincent

Replies: 1

QUESTION: Do you see a mental health therapist through your CF clinic or on your own?
I have never really been into therapy “for myself”. I always had too many medical appointments on the schedule, so the first thing to go was mental health, to make room for more “urgent” health concerns.
My daughters have gone to therapy for years, and I prioritize it for them…. But never for me. Lately, however, the increase in telehealth appointments has made it so I’ve been able to see my own therapist and try to focus in on my mental health too.
I’d love to know YOUR approach to mental health. Do you see someone in person? Online? Through your clinic? Elsewhere?