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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?

Dating and relationships: When do you mention CF?

Sep 28, 2020 05:15 am | Jenny Livingston

Replies: 0
When I was young (and arguably, rather dumb) CF had little impact on my dating life. I was quite healthy, had never experienced major health issues, and could easily “hide” my disease if I wished. I dated a bit throughout high school and got married when I was very young (19 years old). He knew that I had CF, but at that time, even I was unaware of how much it could and would affect our lives.
About a decade later, I found myself divorced, going back to school, managing my health (which had become much more precarious and a full-time job in itself) and raising a child on my own. Entering the dating world seemed more daunting than exciting at the time. I could no longer hide the fact that I was battling CF, nor did I want to. I’d reached a point where I was completely comfortable discussing the many aspects of this disease. My ex-husband struggled to deal with the challenges we faced because of my health. I needed to know that a potential partner was aware of how much CF could impact our lives and that we’d be able to work through those trials together.
When I joined a dating app, more than once I was ghosted as soon as I mentioned CF. When I met my current partner, I was very upfront about having CF. In fact, I was fairly certain that I had overshared on our first date and that he’d never want to talk to me again. Instead, he took it upon himself to research and learn all that he could about CF. It wasn’t long before he asked if he could attend a clinic appointment with me. Four years later, we’re still together and he is my biggest supporter. It turns out, the right person for you won’t shy away because of something like CF! But I understand that it can still be scary to open up about it.
I know that some people choose not to disclose information about CF right away. Others want to share that information immediately. There are many valid reasons for either approach. When did/do you talk about CF in a new relationship? Has a relationship ever changed when you mention CF? Do you think there is a “right moment” to talk about CF with a potential partner?

Godmother of 10months old baby with CF

Sep 28, 2020 04:39 am | JeanDArc

Replies: 2
HI All
I am a Godmother of a 10 months old baby girl with CF living in Slovakia.CF was diagnosed a few weeks after the birth, we have been giving her Dekas Plus vitamins in liquid form, she’s had good results.once she is 2 years old, the doctors will start prescribing Orkambi I think. I recently learnt that there are better CF medicines than Orkambi on the market, e.g. Symdeko. However, Symdeko is not available in Slovakia and Slovakian doctors do not work with it because they are backwards a lot and don’t care much either so I wonder how to get it and how much it costs please. Thanks for any advice.

Living With Pain (Not Taking Meds)

Sep 28, 2020 04:31 am | Bailey Vincent

Replies: 2
To conclude my week of pain-heavy talk (can you tell I’m mentally prepping for surgery?), I was wondering what everyone’s non-medication related tactics are for dealing with aches.
What do you do for pain when you can’t take meds?
For example, are you a heating pad person? A CBD oil fan? A grin-and-bear it type? I would say that, for the most part, I am a “lay down and hold still” type of person when it comes to acute pain, and (especially when I’m training for dance) I love heating pads, ice packs, baths, and Tiger Balm.
Dancers live with low-grade soreness basically all the time since we’re always building muscle and pulling things, but that ability to accept pain and tune it out can be troublesome when it comes to listening to our bodies. Sometimes, I think CF patients are much the same. We are so used to “something not feeling right,” that we under-react in order to not look reactionary.
How much “normal” soreness do you deal with on a daily basis, and how do you treat it?

What Is Your Greatest Pain?

Sep 28, 2020 04:23 am | Bailey Vincent

Replies: 3
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?

The Pain Scale: Yay or Nay?

Sep 25, 2020 04:40 am | Bailey Vincent

Replies: 2
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?