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Being a Parent with CF

Managing a chronic illness can be a lot of work, but adding children to the mix makes it even harder. What is it like to be a parent with CF?

  1. Being a parent with CF is very challenging! I’ve known my whole life that I wanted to be a mom. I had decent lung function when I became pregnant, but during and after pregnancy, I found my lung function hitting an all time low. I have not been able to get it back up, but I keep a strict treatment routine, exercise when I can and eat good to maintain my numbers. It’s been hard to keep up with a toddler, running around and such is short lived. I wouldn’t trade my beautiful daughter for the world! The best thing that has ever happened to me and she keeps me fighting to stay healthy, so I can watch her grow up!

    1. Hi , Thanks for sharing how your pregnancy has impacted your lung function and overall health. I can imagine that's been really tough to manage along with taking care of an energetic toddler. It sounds like you're doing everything you can to keep your lung function high, and all of that takes time & energy. So, give yourself a pat on the back!!!

      How old is your little one? I'd love to hear more about her. Take care, Sarah, Cystic-Fibrosis.com Team Member

  2. She is almost two now, beautiful, fun and smart little girl! My dream come true!

    1. Hi , I'm so glad you have her in your life. She sounds like you're shining star! Best, Sarah, Cystic-Fibrosis.com Team Member

  3. ,
    I can totally related your response. I also have a toddler, well I guess he's a preschooler now. I did great during pregnancy--my weight and pft went up! Afterwards, I definitely struggled until I started Trikafta which almost pushed the reset button. Now, I am 22 weeks pregnant with our Trikafta baby and not doing as well this pregnancy as my last. It can be so tough to be a parent, manage CF, and have enough time to focus on yourself. I agree that it's all worth it! It truly does push you to be a more dedicated patient. Have you been able to start trikafta? Warmly, Janeil cystic-fibrosis.com Team Member

    1. Hi all,


      This is my first post 😀.



      My wife and I are considering trying for a child via IVF but we have seen our friends being ill very often because of the bugs their kids catch at nursery/school. I'm on Trikafta and am stable at the moment, with no exacerbations for over a year.
      We'd love to have a child but are concerned about the impact of frequent illnesses to my long-term health, and the possibility that I may not be able to be there for the child as much as I'd like. I wouldn't want to be in a situation where my wife is looking after both me and a child.


      How have those who are parents found this? Are you ill more often now because you're catching illnesses from your child(ren)? Has Trikafta made a difference to this?


      Would love to hear from you. I only found out I had CF last year at the age of 40, which came as a shock, and I'm still learning about the community.


      Thanks,
      Rakesh

      1. Hi Rakesh, Welcome to our community! Please know you will find support and information here and also on our Facebook page, https://www.facebook.com/CysticFibrosis.comHU/. I'm sure it was quite a surprise to learn of your cf diagnosis at 40. We have many community members who have also been diagnosed at a later age. I understand your concerns about parenthood. It's a big decision. Sharing a link that will take you to stories written by our advocates who are parents. I recommend reading their stories and replying with any questions you may have. I think that's a good place to start. https://cystic-fibrosis.com/parent-with-cf. Warmly, Lynne (team member)

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