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?

Surgery Updates and Physical Therapy

Oct 05, 2020 09:10 pm | Bailey Vincent

Replies: 2

Hello forum friends! I have been gone for a week while in the hospital for surgery, and am trying to catch up on life, work, and forum action. How is everyone?

I guess I’ll kick off my week by just talking about surgery and mobility. The surgery I had last week was aimed at relieving pressure on my nerves and removing a disc in my back, so that I could (hopefully) get feeling and control back in my toes. I’m also having weakness and loss of control in my hands too, which doesn’t fully track, but hoping it resolves on its own. If not, we will run a few more tests in a week or two to see why. For now, I’m supposed to do… well, nothing!

Other than following BLT protocol (no bending, lifting, or twisting, hold the bacon), I am not even allowed to do PT for two weeks. After the two weeks, we will add in home physical therapy, but the BLT goes for awhile. Considering how much I twist just to communicate in ASL with my family across a room or reach to grab something from a side table… it is already SO much harder than I imagined!

Question For You: Have you ever had to work with a physical therapist before, and what were your mobility goals at that time?

Thoughts on post-Trikafta sickness

Oct 05, 2020 10:40 am | Jenny Livingston

Replies: 0

Recently, I’ve been feeling more sick than I had in a very long time. What I thought was allergies (which I recently asked about here in the forum) progressed into what we began thinking was a sinus infection. My doctor prescribed a course of antibiotics that has worked well for me with past sinus issues.

Then, for the first time in over 6 months, I began having a productive cough.

Not coughing up mucus, or even really coughing at all, has been one of the most significant and mind-blowing results of Trikafta for me. When I started coughing and producing thick green mucus again, I knew that I was dealing with more than allergies or a sinus infection. I was immediately prescribed a second antibiotic and I am happy to report that I am responding to them well. I’m feeling much better!

This was the first time I’ve been “sick” since starting Trikafta and the symptoms were incredibly different from my pre-Trikafta exacerbation symptoms. I’ve frequently said that I’m having to relearn my body because it’s changed so much in the past 10(ish) months. For years, I felt incredibly in tune with every sensation . I knew what each symptom meant, when I was sick or simply needed rest, when to seek the help of my CF team, etc. There’s been a bit of a disconnect as my body changes and I’m no longer sure what certain things mean. I suppose, considering all this, it makes sense that I’ll experience sickness a little differently now, too. That certainly seemed to be the case this time around!

(I want to note that for multiple reasons, we were sure that I wasn’t dealing with COVID.)

Have others taking Trikafta found that their symptoms of sickness have changed? Have you had an exacerbation since being on Trikafta? Have you, like me, felt like you’re needing to relearn your body?

Dating and relationships: When do you mention CF?

Oct 02, 2020 05:37 am | Jenny Livingston

Replies: 1

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?

“I’m not unreliable, my health is.”

Oct 02, 2020 04:08 am | Jenny Livingston

Replies: 1

Many times throughout my life, my health has gotten in the way of me fulfilling commitments or obligations. CF can stick a wrench in even the best laid plans… and it drives me crazy! A core tenet of my personality is the desire to be reliable and consistent. Learning to accept that my health is prone to change and affect my plans at any moment is a constant struggle. Just today, I had to cancel an appointment because I’m having symptoms that need to be addressed before we can safely resume in-person appointments, and I’m not happy about any of it!

Does the unpredictability of CF ever get to you? Has there been a time when your plans had to change last-minute because of CF? How do you handle the uncertainty of your health?