• Trikafta update

    Posted by jenny-livingston on July 8, 2020 at 11:35 am

    During my hiatus from the forums, I shared an update on Instagram that I wanted to quickly share here as well.

    I started Trikafta in November, near the end of a two week hospital stay. For some people, within hours of taking their first dose they noticed changes in their breathing or how their body was feeling overall. I was NOT one of those people. The changes I experienced were slower and more subtle. I began feeling like I was disappointing people when they’d ask how I was feeling because I simply didn’t have much to report.

    My biggest “wow” moment happened when, after two months on Trikafta, I was sledding with my extended family and ran up a hill without thinking twice about it. I don’t run ever, but especially not uphill!

    Now, more than six months into this journey, I still can’t tell you when certain things happened since the changes have been so gradual, but I can tell you that my body has indeed transformed.

    For one, I don’t cough anymore. It’s the most bizarre thing! Something that has been so normal for my entire life is now just…. gone. I saw a roughly 8% increase in lung function, giving me my highest PFTs since 2014. I rarely cough up any mucus (I was unable to provide a sputum culture for the second time in my entire adult life at my last clinic visit). My treatment routine hasn’t changed. I’m still doing them as frequently as I was previously, and I haven’t stopped any of my medications.

    My digestion has improved significantly, and I’ve gone from needing 5 Creon with meals to needing just 2.

    I’m not sure many people understand how painful CF can be on a daily basis. Lungs, joints, stomach, sinuses, overworked muscles — something is always hurting! But I now have more pain free days than I’ve had in years.

    This isn’t even a complete list of the changes and benefits I’ve experienced. Most days, I still have a hard time wrapping my head around it all to be honest.

    Every single day, I am amazed.
    Every single day, I remain hopeful.
    Every single day, I am grateful.

     

    gary-levin replied 3 years, 10 months ago 3 Members · 5 Replies
  • 5 Replies
  • becky-fox

    Member
    July 11, 2020 at 11:29 am

    My daughter, Kelly started Trikafta January 22, 2020, one week before her fortieth birthday. I was fortunate enough to be able to accompany her on this momentous day. The very next day she reported that when she walked up the stairs at work, she didn’t experience shortness of breath; this after only two doses of Trikafta. And it just got better and better. These days she walks up to five miles a day, in atwo different jobsddition to working up to twelve hours total some days at two different jobs. She has always been an incredible person, and now, with the help of God and Trikafta, she is pushing boundaries she, and I never thought possible for a person with CF.

  • becky-fox

    Member
    July 11, 2020 at 11:35 am

    My daughter, Kelly started Trikafta January 22, 2020, one week before her fortieth birthday. I was fortunate enough to be able to accompany her on this momentous day. The very next day she reported that when she walked up the stairs at work, she didn’t experience shortness of breath; this after only two doses of Trikafta. And it just got better and better. These days she walks up to five miles a day, in addition to differentto working up to twelve hours total some days at two different jobs. She has always been an incredible person, and now, with the help of God and Trikafta, she is pushing boundaries she, and I never thought possible for a person with CF.

  • jenny-livingston

    Member
    July 13, 2020 at 10:57 am

    Becky, this is amazing! I’m so glad to hear about these positive changes. Being a mother myself, I can only imagine how full your heart is as you see these things taking place. Sending love to you and Kelly!

  • becky-fox

    Member
    July 13, 2020 at 11:44 pm

    Hi Jenny and Bailey,
    I’m happy to share Kelly with you both. Yes, I am way beyond proud of Kelly. Although she hasn’t had the major problems you gals have had with CF, since she has gotten older, her condition was starting to get gradually worse. Starting Trikafta has made a tremendous difference in her life. It was truly an answer to many prayers. Kelly’s main job is in a real estate office as part of a team (she isn’t an agent though). Her second job is a type of manager at one of the local PetSmart stores in our area. She especially loves that job because of working around animals. Needless to say, Kelly has been a constant inspiration to me. ❤

  • gary-levin

    Member
    August 6, 2020 at 2:24 pm

    My 30 year old son noticed an immediate improvement within 24 hours, his sputum was liquified and he spit out a lot of fluid. He felt so much better, and realized he had never breathed so easily, he stopped coughing almost immediately, and walks easily without shortness of breath. He did have some serious side effects, jerking, insomnia, depression, and tiredness. After one month he decided to stop using it since it was effecting his quality of life more than the CF. Eventually after several weeks he went back on it, every other day and is doing well. He has gained 10 pounds. I think the dosing needs to be adjusted for small people. The studies used a set dosage that may not be appropriate for all patients. Patients need to alert their CF clinic about this.

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