CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • CF Clinic Check Up

    TodayI had my 3 month check up. I’m seen every 3 months when I’m feeling decent. I was last seen in January after my stay in the hospital. My lung functions are holding steady. My FEV1 was 35%/.94 L. My baseline is between 30%-38%. My weight was down a few more pounds which I’m happy about. I’m not doing anything to try to lose weight but with the amount of weight I put on from Trikafta, losing a few pounds is a good thing. Don’t be worried about that part. It’s A OK! My lungs sounded decent. All other aspects (dietary, pharmacy, PT) of my appointment were good. I’m up to date on all screening tests as well like abdominal ultrasound, bone density, labs, glucose tolerance, chest X-ray. I go back in 3 months for another regular check up. There’s nothing much to update on which I’m perfectly fine with. I’ll definitely take the normal CF crap over sick CF crap. I hope you all are ready for spring. I know I’m very ready for warm sunshiny weather all the time. Although I am in east Tennessee so we don’t get bad winters and we don’t get very cold. We have had some beautiful days in the last few weeks.

    Until next time…

  • Happy birthday to me…I’m 43!!

    My 43rd birthday was yesterday. February 1st should be a national holiday by now! Haha

    I absolutely love my birthday. I know most women don’t like getting older but I’m not most women. Getting older is a blessing a lot of people take for granted.

    Life expectancy numbers have never really worried me. It’s just a number. When I was born the life expectancy was around 12. Now for CF patients that were born between 2017-2021 the life expectancy is 53!!! There are now many more treatments and medications for CF including the revolutionary modulators like Trikafta that works on the cellular level. Research for CF is so important to extend the lives of those with CF. Finding a cure for CF is the ultimate goal. The CF Foundation has more than 70 chapters in the United States. Their slogan is “make CF stand for Cure Found.” You can go to http://www.CFF.org to find a local chapter or to donate to the cause. You can also find a Great Strides walk close to you. You can start a team or be an individual walker. Great Strides is the biggest fundraiser for the CFF.

    Thank you for always checking in on me and for all the prayers and positive thoughts. Just remember that growing old is a blessing that isn’t offered to everyone.

    Until next time…