• I’ve seen the following scenario play out more than a few times:

    Someone posts a picture of themselves enjoying drinks with friends, and inevitably someone else comments that it’s not okay for people with CF to drink alcohol. Let’s unpack that a little bit, shall we?

    Sure, there are concerns about excessive alcohol consumption but that goes…[Read more]

  • Jenny Livingston posted a new activity comment 9 hours, 57 minutes ago

    @franciscorioseco hello and welcome to the forums! I’m Jenny, one of the moderators (along with @bailey-vincent). If there’s anything we can help you with, please don’t hesitate to reach out. Thanks so much for joining us here!

  • Jenny Livingston posted a new activity comment 9 hours, 58 minutes ago

    Julie, hello and welcome to the forums! I’m Jenny (32 with CF) one of the forum moderators. If you have any questions about navigating the forums, or there’s something specific you’d like to chat about, feel free to reach out to myself or my co-moderator @bailey-vincent. We are happy to help and so glad that you’re here!

  • I’ve been on Trikafta for just over two months now, and I feel like it’s been a bit of a disappointment when I’ve said that my day-to-day life hasn’t changed that much. This drug is supposed to be “life changing” after all.

    Well, yesterday we went sledding and at one point, my nephew was waiting for me at the top of the hill so we could sled…[Read more]

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

    Hi, Dorene! Welcome to the forums. I’m Jenny, one of the forum moderators. If you need any help navigating the forums, feel free to reach out to myself or my co-moderator @bailey-vincent. We are happy to help and so glad that you’re here!

  • Let’s face it — the world of dating can be a scary place for anyone! For those of us with CF, I feel like we have some additional challenges. From coughing attacks and taking enzymes on dates, to talking about life expectancy and the uncertain future, CF adds a level of awkwardness and somber conversations that aren’t typically part of dating for…[Read more]

  • Jenny Livingston posted a new activity comment 3 days, 6 hours ago

    Last year, I was in the planning workgroup for BreatheCon and it was so much fun! I also had the opportunity to be a panelist at VLC 2019, along with the lovely Somer Love and Shelby Leubbert. I’m also involved with CF Peer Connect and Community Voice. These programs and experiences have made a phenomenal difference in my life and have helped me…[Read more]

  • I grew up in a time when manual CPT was the gold standard of airway clearance for people with CF. My parents would “pound” three kids (my sisters and I) multiple times a day — their forearms must have been ripped!

    I got my first Vest when I was 13(ish) years old and it has been my go-to for airway clearance ever since. I also like to throw…[Read more]

  • Jenny Livingston posted a new activity comment 4 days, 8 hours ago

    Rebecca, hello and welcome to the forums! I’m Jenny (32 with CF) one of the moderators here, along with the lovely @bailey-vincent. It’s great to read about your son’s successful transplant! If you ever have questions or there’s something specific you’d like to discuss, please reach out to Bailey or myself. We are happy to help and so glad that…[Read more]

  • “Warrior” is a word used frequently in the CF community and chronic illness community at large. And when I look at the individuals and families fighting this disease, warrior seems to be a very fitting term. The battles fought against this disease are strenuous, harrowing and all to often, entirely unfair.

    But even though I fight many of…[Read more]

  • Jenny Livingston posted a new activity comment 1 week ago

    Hello and welcome to the forums! I’m Jenny, one of the forum moderators. If you have any questions, please feel free to reach out to myself or @bailey-vincent, our other moderator. We are happy to help and so glad that you’re here! Also, if there’s anything specific you want to discuss, go ahead and make a post or ask one of us to open up a…[Read more]

  • Jenny Livingston posted a new activity comment 1 week ago

    You are more than welcome to share. Will you please just reference the forums (maybe just include the url for this post) in your newsletter?

  • The other day, on the phone, someone asked if my mama was home. Not the head of the household, not my mother, my “mama.” As if she were talking to a child.

    This is not the first time something like this has happened.

    It happens in real life, too. Although it’s happening less and less now that I’ve earned some grey hair and my face is…[Read more]

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

    When I read this column, I felt parts of it in my soul! I’ve always had the burning desire to be liked by people, and I hate conflict of any kind! So when a stranger on the internet says something unkind, I always wonder what I’ve done wrong. I have a really hard time letting go of it!

    Logically, I realize that their comments have more to do with…[Read more]

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

    Hi, Michelle! Welcome to the forums. I’m Jenny, one of the moderators here, along with the lovely @bailey-vincent. If you have any questions about navigating the forums or there’s something specific you’d like to talk about, please feel free to contact either one of us. We are happy to help and so glad that you’re here!

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

    Chris, hello and welcome to the forums! I’m Jenny, one of the moderators here. I see that you’re a research coordinator – that’s awesome! There have been several other research coordinators joining recently as well. We’re so glad you’re here! If you have any questions or there is anything specific you’d like to discuss, feel free to reach out to…[Read more]

  • On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes difficult to talk about. Join the conversation on Instagram or here in the forum.

    𝐑𝐄𝐀𝐋 𝐓𝐀𝐋𝐊 𝐓𝐔𝐄𝐒𝐃𝐀𝐘: 𝐔𝐍𝐒𝐎𝐋𝐈𝐂𝐈𝐓𝐄𝐃 𝐀𝐃𝐕𝐈𝐂𝐄

    “Try CBD oil. Stop taking those toxic medications. Push yourself a li…[Read more]

    • This cracked me up because it’s SO true and relatable. The hardest part for me is when the advice is good, but I also know I can’t commit to it. For example, I have gotten advice about cutting out dairy because it increases mucus. I know this is true and I really wish I could (I have the soul of a vegan), but almost any time I cut out dairy, I end…[Read more]

  • Jenny Livingston posted a new activity comment 1 week, 3 days ago

    Jodie, I love that you’re a study coordinator! I’ve developed such good relationships with the clinical research team at my center. Being involved in research has been so fascinating and rewarding to me, I imagine it’s similar (although from the opposite side) for you guys as well!

  • Jenny Livingston posted a new activity comment 1 week, 4 days ago

    Cassandra, hello and welcome to the forums. I’m Jenny, one of the moderators here. Thanks for joining us! If there is anything we can help you with, please don’t hesitate to reach out to myself or @bailey-vincent, our other moderator. We are always happy to help!

  • In 2013, someone approached me in clinic and asked if I wanted to participate in a clinical trial. I didn’t have a clue what I was getting into, but the appointment schedule wasn’t too rigorous and I didn’t have much else going on at the time, so I agreed.

    The first trial was very short-term, but it led to other amazing opportunities. I was…[Read more]

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