• Weekly Wins

    Posted by jenny-livingston on August 13, 2021 at 10:55 am

    Tell me, in the past week or so, what is a “win” you’ve experienced? Related to CF or other areas of life; big or small; silly or profound. Tell me something that you’ve been blessed with, a thing you’re kicking butt at, or an accomplishment you’re proud of.

    This past week we celebrated my daughter’s birthday. I’m a huge fan of birthdays, like to throw themed parties, and tend to go way overboard when it comes to celebrating her in particular. It was a smashing success! Later that day, since she is now 12 and qualifies for the Pfizer COVID vaccine, she received her first dose. The nurse joked about it being a bummer that she had to get a shot on her birthday, but we just laughed — she has been saying for months that this would be her favorite birthday gift.

    As noted in a previous post this week, I am feeling (mostly) well, sleeping much better, and returning to a mindset that feels so much more like “me” after lowering my Trikafta dose.

    Also, I was able to accomplish a few projects around the house that I’d been putting off and it feels so nice to have them completed.

    That was a handful of wins; sorry for the overshare. What about you?

    If sharing a win is hard for you and there is something you’re currently struggling with, feel free to share that here as well. We can turn this comment section into a celebratory/supportive thread. We are here for you!

    jenny-livingston replied 2 years, 10 months ago 2 Members · 2 Replies
  • 2 Replies
  • paul-met-debbie

    August 17, 2021 at 12:26 pm

    I am very happy about your wins, we can never overshare the positive I think.

    For me, I already shared this in a broader setting in my recent Sunday Morning columns, but it’s well worth repeating here: since taking Kaftrio (Trikafta) I no longer have to cough.  That’s right, you are reading correctly. Not less, but not at all.

    This is a true miracle and it happened so fast, within the first week of use. No more coughing, especially at night this is a blessing. And for the first time in about 40 years, I don’t take antibiotics. That’s another miracle. Compared to the last few months the difference is enormous. I had quite some inflammation and infection going on in my airways despite continual antibiotics, both are completely gone. Only occasionally there is a little tickle in the airways that prompts a slight, isolated cough, which immediately takes care of something that my lungs didn’t want there. I can breath out without cramping up and coughing, breath in fully without any “wrong” sounds. Pranayama was never so enjoyable as now!

    • jenny-livingston

      August 17, 2021 at 4:07 pm

      Paul, woohoo! I am very happy for you. It’s still so bizarre to me that my signature cough is no longer present. My family used to joke that they could locate me in public just by following the sounds of my cough. It’s been nearly 2 years for me, but I still marvel at the fact that my cough is gone.

Log in to reply.