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  • If you could, would you meet with your representatives in your state to talk about life with CF, about healthcare, or about any issue you’re passionate about?

    What issues would you want to talk about?

    What state do you live in?

  • Recently, I hung out near a bonfire with some friends for the first time in a long time. I hadn’t sat by one in a long time so I didn’t think much of it. The next morning, I noticed my chest was tighter than usual. I realized it was probably due to the bonfire.

    Have you noticed that you’ve felt similarly? Do you avoid bonfires? How do you…[Read more]

  • I’ve found that whenever I make what I perceive to be a mistake, the language I use to talk to myself is dehumanizing. I call myself dumb or an idiot or worse. I’ve started to recognize how bad that is for my self-esteem and self-compassion. But whenever a friend vents to me, I’m understanding, empathetic, and nonjudgmental.

     

    1. How do…

    [Read more]

  • One of the coolest things my doctor has ever done was give me his phone number. It felt like I could trust him and also gave me comfort that I could reach out if things got bad in a hurry.

    1. Do you feel like your doctor is accessible or easily reachable? Why or why not?
    2. What are some ways you think this could be improved?
  • There are pockets of the internet where there is productive discussion to be had about heavy topics (Our hope is that this forum is one of those places!) In the CF community, there are definitely issues that are heated enough that people will express serious disagreement no matter what.

     

    1. What do you think is the best way to express…

    [Read more]

  • Tré LaRosa posted a new activity comment 1 year ago

    Welcome to the forums Hannah! Hope you’re well. I’m Tré, one of the moderators. Let me know if you have any questions!

  • Tré LaRosa posted a new activity comment 1 year ago

    Welcome to the forums Erin! Hope you’re well. I’m Tré, one of the moderators. Let me know if you have any questions!

  • Tré LaRosa posted a new activity comment 1 year ago

    Welcome to the forums Rhea! Hope you’re well. I’m Tré, one of the moderators. Let me know if you have any questions!

  • Tré LaRosa posted a new activity comment 1 year ago

    Welcome to the forums Kristen! Hope you’re well. I’m Tré, one of the moderators. Let me know if you have any questions!

  • I remember as a kid, I had a hard time coming up with sputum for CF appointments and hated doing the throat swab. Since being an adult, it’s been less of a problem.

    1. Does your kid have trouble coming up with sputum?
    2. Do you analyze their sputum culture results? Do you worry about them?
    3. Does this affect yours and their experience in clinic?
  • I remember as a kid, I had a hard time coming up with sputum for CF appointments and hated doing the throat swab. Since being an adult, it’s been less of a problem.

    1. Do you have trouble coming up with sputum?
    2. Do you analyze your sputum cultures? Do you worry about them?
    3. Does this affect your experience in clinic? Like anxiety or anything?
  • People with CF have to be especially attuned to their electrolyte levels when they exercise.

    1. Do you exercise a lot? What type of exercise?
    2. Do you sweat a lot?
    3. What type of salt replacement therapy do you use?
    4. Do you get bad headaches if you don’t replace quickly enough?
    1. Do you get anxious about your PFTs? Why or why not?
    2. What do you in preparation for it? Both in the days and minutes before?
    3. Are your PFTs stable? Feel free to not share about this if you’re not comfortable.
  • A couple of weeks ago, I did an exercise test for the first time. It was really cool to see what my VO2 max is.

    1. Have you ever done an exercise test? Was it routine or for something else?
    2. If you’re comfortable, what was it? How did it compare to your PFT?
    3. Was it strenuous? Did you have a hard time?
  • As I’ve gotten older, I’ve noticed that caffeine has affected me more (bummer, I know).

    1. Do you drink caffeine? What types – tea, coffee, energy drinks?
    2. How does caffeine affect you?
    3. (Strangely for me, I’ve noticed it affects me differently depending on what the drink is.) Have you noticed this?
    4. Do you notice caffeine interacting w…

    [Read more]

  • Tré LaRosa posted a new activity comment 1 year ago

    Hey Tatiana, I’m Tré, one of the forum moderators. Thanks for registering! Please let me know if there is anything I can help with 🙂 What topics in the CF world are you particularly interested in?

  • Tré LaRosa posted a new activity comment 1 year ago

    Hello Alyce, thanks for registering! I’m Tré, one of the forum moderators. Please let me know if there is anything I can help with 🙂 What topics in the CF world are you particularly interested in?

  • Tré LaRosa posted a new activity comment 1 year ago

    Hi David, thanks for registering! I’m Tré, one of the forum moderators. Please let me know if there is anything I can help with 🙂 What topics in the CF world are you particularly interested in?

  • Tré LaRosa posted a new activity comment 1 year ago

    Thanks for registering, Dakodah! I’m Tré, one of the forum moderators. Please let me know if there is anything I can help with 🙂

  • We’ve all been told for so long that breakfast is the most important meal of the day. I dunno if I truly believe that but I definitely believe eating a healthy(ish) breakfast is good and important, especially for people with CF. I’ve noticed I get shaky from some nebs and caffeine, but eating helps!

     

    1. What do you eat for breakfast?
    2. Do…

    [Read more]

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