• @ckolassa you remind me of my own mother. She’s told so many people, friends and strangers alike, about Trikafta. She’s been a CF parent for over 40 years, and this is the first time she’s experienced this level of utter amazement at a drug/treatment.

    I love reading about your speaking opportunity. Sharing our stories can be so incredibly powerful!

  • @jpaul I really love this response! Guilt is one of the emotions I struggle with most, and I am constantly reminded that it serves no real purpose, but it is still so hard to shake. I think I’ll start using “perhaps” a lot more frequently…

  • We’re back with Vinny as our MCM! @vincenz99 is 30 years old and from NY. Here are a few things that’re important to his story with CF.

    🔥 I was diagnosed with CF at 6 months old, soon after the discovery of the CF gene. Luckily, my family didn’t let this grim diagnosis & unknown future keep me from living the life of a normal kid. I was a…[Read more]

    • The never coughing aspect of Trikafta that people are reporting is just shocking and thrilling to me. That’s how my kids find me in the store! lol. Like… what?! In terms of hobbies, most of my hobbies are also my jobs, but when it’s warm outside, I LOVE being outdoors near water (hiking or even just sitting in the sun with a book).

  • I’ve talked before about the guilt I feel for having access to a “miracle drug” (Trikafta) when others, including some of my very good friends, don’t. Whether it’s due to genetics, geography or insurance issues, I feel deeply for those who are watching from a distance — seeing others benefit from a drug they’re unable to take.

    It causes some…[Read more]

    • I think sharing them is definitely the right thing to do! It’s a new layer of mental health we hadn’t yet considered with the release of this drug, and should be discussed. I’m curious if others are dealing with (unfair and misplaced, of course) guilt as well?

  • I’m very fortunate in that I’ve never been on Prednisone longer than 5 or 6 days, and only two times that I can remember. Once to combat an allergic reaction and once to calm inflammation before a sinus surgery. So I’ve heard of all these side effects, but never experienced them myself.

    I’m sorry you’re feeling so terribly, and glad that you’re…[Read more]

  • Jenny Livingston posted a new activity comment 2 weeks, 1 day ago

    Deb, hello! As Kevin said, welcome to the forums. I’m Jenny, one of the forum moderators. Please feel free to reach out if you need help navigating the forums, or if there’s something specific you’d like to discuss. We are happy to help and so glad that you’re here!

  • In my journey with CF, I’ve learned (and re-learned) that numbers are just part of this complex CF puzzle. While we like to focus on the numbers and they are indeed significant, it’s important to remember that there’s more to the story.

    Yesterday I had clinic and was elated to discover that my lung function is currently the highest it’s…[Read more]

    • I’m so sorry you have pneumonia! What’s the treatment plan? But YES… I find numbers baffling. I had my highest lung function in awhile when I left the hospital a couple of weeks ago, yet it was nearly cut in half by the time I did PFTs at clinic this week. I have just gotten off IVS and am feeling pretty decent. I was SHOCKED, to say the least.…[Read more]

  • @ckolassa, wow! Thanks for sharing this. I feel for your daughter, and I cant help but think that if I’d earned my scars at a younger age, I’d be less accepting of them. Kids can be especially hard on one another. I hope that as she ages, she’ll be able to see and recognize her strength and that her scars are a symbol of those things!

  • Oh, man, can I ever relate to this! I love that you ask whether finding that balance is a myth. I’ve often wondered the same thing: “Am I just not doing this right, or is it actually impossible to find that balance?” So while I have no advice, know that you’re not alone in this!

  • CF clinic days are, in a word, exhausting.

    They’re long and sometimes incredibly difficult. For me, they also include 5 hours of travel time (round-trip). There’s always pressure to do well; sometimes it’s self-imposed and sometimes it’s unintentional pressure from loved ones. And, let’s be honest, a LOT of bad news has been delivered in a…[Read more]

    • This is so timely because I JUST had my clinic visit yesterday! I was extremely nervous, and almost wanted to cancel entirely because I had so much going on personally that my own health seemed second-fiddle. Will you let us know how it went?

  • I don’t have many scars, but those that I do tend to garner quite a bit of attention. The scar on my chest where my port was placed (and subsequently removed) is rather prominent and I get questions about it frequently.

    “I was shot,” is probably my favorite response because the reaction I get is priceless. But I’m quick to take that back…[Read more]

  • Jenny Livingston posted a new activity comment 2 weeks, 6 days ago

    Ilka, hello and welcome to the forums! I’m Jenny (32 with CF), one of the moderators here. You’ll soon be hearing from Bailey Vincent who also moderates the forums. Please feel free to reach out to either of us if you ever need help navigating the forums, or if there’s something specific you’d like to discuss. We’re happy to help and so glad that…[Read more]

  • Growing up, my parents were told that it was important that my sisters and I get as much food into our bodies as possible. Calories were what mattered most, and it didn’t really matter what kind of calories we were getting, as long as we were getting enough. Snacks and junk food? Sure! Second and third helpings? Go for it!

    Even if I wasn’t…[Read more]

    • I have wondered about the statistics on this for awhile, as well. I hypothesize- just from those that I’ve spoken to- that the prevalence of unhealthy connections to food is rather high. I think some of the problem is that we also get used to being at a lower body weight, and others commenting on said low body weight, so if or when we become a…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks ago

    I’ve been in a situation that, while different from yours, gave me that uncomfortable feeling of disconnect from myself. It was during a particularly difficult hospital stay and I was heavily medicated due to severe pain. At one point in my stay, I realized that I had no memory of the first several days I was admitted. I’d posted some things on…[Read more]

  • Hey y’all! We’re so thankful that Joe is our MCM. @joe_komitor is 23 years old and is from NY! Here are three things important to HIS story with CF (be sure to answer his Q in the comments!)⠀

    😎I was diagnosed with CF at 18 months old in 1998. Growing up I had a relatively normal childhood and was really active with sports. I was very fo…[Read more]

    • Wow, what a lovely story from Joe. Thank you for posting, Jenny! I love that his mom is such a champion of his health. We all need that person holding us to a higher standard in our life, even when we don’t want to hear it

  • Jenny Livingston posted a new activity comment 3 weeks, 1 day ago

    Hi, Sharie! As Bailey said, we’re happy to help and so glad that you’re here!

  • I’ve been spoiled when it comes to pharmacies and getting my specialty meds. For the last couple years, I’ve been able to fill my prescriptions at a specialty pharmacy that works directly with my hospital/care team. I’ve gotten a call from the pharmacy tech, placed my order, and had my meds magically show up on my doorstep the next day.

    Due…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 5 days ago

    Ooh, this is a topic that I’m incredibly interested in! I always wonder how other parents approach these things. As you know, I also have a 10-year-old daughter. She has always been involved with my care. As a toddler, she’d squeeze my nebulized medications from the vial into my neb cup. As she got a bit older, she really enjoyed watching me…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 5 days ago

    Carol, hello and welcome to the forums! I’m Jenny, one of the moderators here (along with @bailey-vincent). I’m 32 with CF and I’ve been on Trikafta for just over two months. I see that you’ll be starting it soon! I’m excited to get to know you and hear more about your experiences. If you ever need help navigating the forums, or there’s something…[Read more]

  • Jenny Livingston posted a new activity comment 3 weeks, 5 days ago

    Eating is something I do a lot of… always! But it’s probably a good idea to pay closer attention to the type of calories I’m taking in during these low energy times. It’s entirely possible that I’m still eating, but not taking the time to choose the best foods since I’m already so tired (I don’t like to cook during these down times). Thanks for…[Read more]

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