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  1. K

    Getting back to normal

    With Trikafta improving and stabilizing many of us, the idea of getting back to a semi normal life (once the pandemic is over) and reconnecting with people who I've lost touch with after being sick for so long is scary to me. I feel lost and out of touch with the world and not sure how to jump...
  2. K

    Trikafta and tendonitis

    Has anyone been diagnosed with tendonitis since they started taking Trikafta? I now have it in 3 places and I'm curious if this is a side effect. My daily activities haven't changed since I started so not sure where this is coming from.
  3. K

    Liver Transplant before Lung Transplant?

    Has anyone had a liver transplant way before they needed a lung transplant? I'm curious as to how this works as I know liver and lungs need to come from same donor
  4. K

    Tips for Air Travel with IV meds

    I will be flying out of town while on IV meds and I've never flown with them before. Wondering what tips you guys have to getting though security and what not. I do have TSA Pre-Check so that might help too. Thanks!
  5. K

    Right Heart Catheterization

    So I have to get all the invasive testing out of the way for my transplant stuff. While really I'm still not sick enough to be listed, my transplant doctor wants this information for my chart for a baseline type of thing. This test however, has me beyond nervous. I have no idea what to expect...
  6. K

    Need ideas for exercise

    So I'm having issues with coughing up blood anytime I get my heart rate up. It's annoying and some of the most basic exercises set it off. I can't lay on my back at all and doing yoga even makes it happen...even the most low key poses. My doctors have looked at the vein that is causing it and...
  7. K

    Anyone taking Avycaz?

    Has anyone started taking Avycaz during their tune-ups? I might be switched over from Colistin to this. Wondering what your experience with it was. How did it make you feel... ect.
  8. K

    Five Feet Apart CF Movie!!

    For those of you who don't know March 22, 2019 in theaters EVERYWHERE there is a movie called Five Feet Apart that is about a friendship between two CF patients who meet while they're both being treated in the hospital. Even though the title is about a foot off from being'm...
  9. K

    Make your hospital bed more comfortable!!

    I just wanted to share this tip because not many people think to do this but it's greatly improved my hospital stays. I always bring a twin sized egg crate foam mattress with me to the hospital, with my own sheets. I put it on top of the hospital bed mattress and it has made all the difference...
  10. K

    What do you say you do?

    When meeting new people, I always fear the question of "what do you do for a living"? Since i'm not stable enough to work and don't want to get into detail about my CF, I always find it hard to answer this question. I want people to get to know me before knowing I have CF and the judgement...
  11. K

    Sweat test before starting Symdeko?

    I just got approval though my insurance for Symdeko and will be switching over from Orkambi. Did anyone who has started on Symdeko have a sweat test done before they started on it? My clinic keeps talking about it before they start me on it and I can't seem to get a straight answer from anyone...
  12. K

    April is Organ Donation Awareness month

    April is Organ Donation Awareness month. This month lets try and let people know how important it is to become an organ donor. Let's try and get more people to agree to do it so more of our fellow Cfers have lungs ready for them when they need it. Those of you who have had transplants, let...
  13. K

    Running out of IV med options

    So after talking with my doctor today, it seems like my arsenal of IV meds is pretty much gone. So I was curious as to what happens when your sputum becomes resistant to IV antibiotics. We've already tapped into the Infectious Disease resources too. Wondering if anyone has reached this point and...
  14. K

    Please be an Advocate for us!

    My doctor was telling me that a lot of CF clinics who see both adults and children at a children's hospital, will soon be transitioning CF adults to an adult hospital when admitted now. While part of me is excited that, Yay we're living longer and are going to be recognized in adult hospitals, I...
  15. K

    NAC vitamins vs Mucinex?

    So from doing research on here I've seen that NAC vitamins are a common drug recommended for CF patients in Europe. I've also seen that several people take Mucinex here in the US. Does anyone take both or would recommend one over the other? Just curious about what you guys think
  16. K

    Sickness prevention while living with someone in a small area?

    For those of you who are married or living with someone else, what kinds of precautions do you guys take to avoid getting sick from someone else? I still live at home but this conversation came up with my BF who we think got me sick. While living at home I know how to keep things clean and am...
  17. K


    I just read an article about a super food for CF that's called mauka honey. It's supposed to help with a lot of things. Just being curious, has anyone used this or does anyone have any recommendations of a super food that they use that works for them?
  18. K

    Low grade fevers and swelling

    So for the past couple of years right before I start to get sick I experience low grade fevers and ankle and leg swelling. After a couple of days of this my fevers run into the 101-103 range and I'm admitted. I have about a two week break between admissions at this point. My doctors aren't sure...
  19. K

    Immunodeficiency treatment options

    So I recently found out in my search for answers in treatment for the swelling and fevers that happen before I get sick that I have an immunodeficiency that mimics Lupus. I have a CF clinic appointment tomorrow that I will be asking for recommendations on doctors to see. I was curious though as...
  20. K

    SickKids Foundation awesome video!!

    A friend of mine who I went to college with posted this video on facebook today. It's for the SickKids Foundation and I loved it and wanted to share it with you. It features kids who have chronic illnesses (CF was listed as one of them!) and them fighting and remaining strong. It made me cry and...