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?

Living numbers-free (for now)

Aug 18, 2020 06:35 am | Jenny Livingston

Replies: 0
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?

Changing Your Health For Someone You Love

Aug 18, 2020 06:24 am | Bailey Vincent

Replies: 1
I attended a family wedding this weekend and went to as many lengths as possible to avoid germs or close proximity to others, as well as putting anyone else at risk. It was outdoors, using masks, and taking lots of precaution… But, as with most things during this tenuous time of pandemic, it was nerve wracking and scary nonetheless.
It’s not because I fear for myself or my health, per say (I tend to be pretty laid back), but because I want to be a responsible member of society and a role model for anyone who might be watching.
This made me wonder: Have any caregivers changed their own health habits to support their loved ones?
If you love someone with CF, have you ever felt you should role-model certain health behaviors for them? Or have you made changes to your own routines to better support?

Clinical research in the time of COVID

Aug 14, 2020 08:05 am | Jenny Livingston

Replies: 0
I’ve previously mentioned how much I enjoy participating in clinical research. I’ve been involved in several clinical trials over the years, including the Orkambi drug study (which I’ve talked about both on IG and my blog in the past). However, like many other aspects of life and healthcare, clinical research has changed in the time of COVID.
I’m currently preparing to screen for a new study, and it’s… going to be a bit tricky. In addition to all the precautions being taken in the hospital/clinic setting, I’ll need to be tested for coronavirus prior to each study appointment. I’m a little anxious to be attending in-person appointments at the hospital, but also incredibly excited to be participating in research once again!
If you’re involved in research, either as a patient/participant or clinical researcher, how have things been different for you during this pandemic?

CF: A whole body disease

Aug 14, 2020 06:39 am | Jenny Livingston

Replies: 4
I frequently hear CF referred to as a lung disease. While I understand that for those who aren’t informed about CF, calling it this is a quick and easy way to describe it. But also, calling it this can be incredibly misleading. As we know, CF is a whole-body disease!
I have friends within the community who have never been hospitalized due to lung issues, but regularly have GI-related hospitalizations. Personally, my sinuses have been far more problematic in recent years than my lungs have been. CF is such an individualized disease and the ways in which it manifests itself are as unique as each of us living with it.
In what ways does CF affect your body? Do you have other organs that are affected more than your lungs? What symptoms do you have that differ from the “classic” explanation of CF?

Your Disease Process: Which Organ Hurts Most

Aug 13, 2020 08:08 pm | Bailey Vincent

Replies: 6
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?