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?

What’s Your Caretaker Experience?

Jul 09, 2020 05:24 am | Bailey Vincent

Replies: 0
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?

NHS, Vertex Strike Deal to Make Kaftrio Available in England

Jul 09, 2020 04:36 am | Cystic Fibrosis News Moderator

Replies: 0

Kaftrio (ivacaftor/tezacaftor/elexacaftor) will be available in England as soon as the medication is approved by the European Commission. Click here to learn more.
What do you think of this news?

Who Else Is Getting Mask Hate?

Jul 08, 2020 01:31 pm | Bailey Vincent

Replies: 0
QUESTION: What is the most ridiculous thing you’ve been told about your mask lately?
I have received a lot of intense comments from strangers the last couple of weeks, most of which were refuting the need for masks. To be fair, I’ve posted about their usage in the history of CF more than anything… but not everyone takes the time to read what’s written or understand “these are not new and dangerous for us”.
Did you wear a mask to clinic growing up? Do you have a brand you prefer most?
(PS: My column yesterday is all about this topic)

Trikafta update

Jul 08, 2020 06:35 am | Jenny Livingston

Replies: 0

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.

How Many Of You Have Liver or Pancreas Involvement?

Jul 08, 2020 06:11 am | Bailey Vincent

Replies: 1
I haven’t always had a wonky pancreas, but it has become more so throughout the years. A lot of my billiary backup seems liver related (my enzymes get elevated), and my pancreas reacts like the overly-mouthy best friend who stands a little too close.
I take Creon, like many of us, and watch my sugars, but I’m lucky to not need any major interventions yet. However, I have “attacks” (bile, pancreatitis pain, high liver levels) more and more frequently these days, sometimes for weeks at a time, and it is really making me ponder quality of life when it comes to these finicky organs.
How many of you have some sort of liver or pancreas concern, and if so: What is it?