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?

The Pain Scale: Yay or Nay?

Sep 24, 2020 06:31 am | Bailey Vincent

Replies: 0
I know I’ve been discussing pain a lot this week, but I had to ask:
Should the Pain Scale be erased from medicine?
Personally, I have an incredibly hard time contextualizing pain and communicating it to others. I never want to use a 9 or a 10 (even when I’ve likely experienced my own version), so I aim low numerically, or “explain away” instead. I am not a number person, so narrowing it down to something so simple when it feels so complex is like a multiple choice test I can’t pass.
“I’m a 7 if I’m standing, but a 6 if I’m sitting, and maybe a 5 if I’m laying down completely and taking meds. But I was an 8 when I had my daughter without an epidural, but maybe that was more like a 9 at times? I’ll never be a 10… that’s reserved. And sometimes I think it’s a 4 because I’ve had 7’s and they are worse than this.”
I have too many words and thoughts and self doubts to just say: “This is a solid 8”; to answer resolutely.
Where do you fall on the pain scale? Do you feel comfortable with it, or wish we had another system? Do you feel you land on a number easily, or aim lower or higher than you should?

Thoughts about pregnancy, motherhood, and CF

Sep 24, 2020 06:10 am | Jenny Livingston

Replies: 0
I grew up in a time when women with cystic fibrosis simply didn’t have children.
For one, many women didn’t live long enough to start a family (my life expectancy at the time of my birth was 20) and those who did were oftentimes advised to not have children for the sake of their health.
In addition to concerns about the impact of pregnancy, infertility in women with CF was not well understood.
For as long as I can remember, I’ve had a profound desire to be a mother. Morgan was my miracle baby. She came into this world before CFTR modulators existed and resources for pregnant women with CF were scarce.
Now, thanks to medical and scientific advances, more and more women with CF are having children. It’s no longer a rare thing! I see new pregnancy announcements at least weekly! (“Trikafta baby” is a common phrase these days.) There is now an abundance of resources available to current and prospective mothers, and the online community is incredibly active and supportive.
I am amazed at the progress I’ve seen in this area during my lifetime, but more specifically in the last decade. It seems that the medical community has shifted from the mindset of “you can’t/shouldn’t have kids” to “how can we support you in this journey?”
We frequently talk about how research, fundraising, and advancements in care lead to better health and longer lives for people with CF. But what’s just as important to me is the ways in which these things provide new opportunities (like motherhood) and drastically improve our quality of life.
Motherhood has been the most fulfilling, rewarding, and soul-altering journey. I’m thrilled to see so many of my friends getting to experience the same thing. I also love knowing that this generation of young girls with CF will have even more support and resources available to them should they choose to have children someday.

If you are a mom with CF, have you felt supported in your pregnancy/motherhood journey? Are there aspects of your CF care that you wish were different or better in regards to motherhood? If you are a prospective mother, do you have access to information and resources about pregnancy and motherhood?

What Is Your Greatest Pain?

Sep 24, 2020 05:15 am | Bailey Vincent

Replies: 1
Since pain has been on my mind this week, I was wondering:
What is the most painful procedure you’ve ever had as a patient so far?
I wrote a column yesterday that alludes to my recent release from pain (since my spine symptoms have worsened and I’m now mostly numb), and how that worsening is actually a mental relief. I didn’t realize how difficult it truly has been until it lessened and my brain came back “on line”.
I often get pain amnesia after a surgery or procedure, and forget how bad it felt at the time. Still, if I had to compare, I’d say my Top Pain is a toss up between pancreatitis attacks (those are miserable)… when my ICD was placed and they had to cut through my chest muscle (because it completely cramped up after)… when I delivered my daughter without any pain meds or numbing (although that was pain with a purpose, so mentally easier)… and, of course, the spine suffering I’ve dealt with these last six months.
All of those pains were so different from one another, but worth reflecting on and learning from.
What about you: What pain tops the list? And if you’ve already shared about this previously/this week, what about a mental pain you’ve overcome before?