April 17, 2020
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?
April 18, 2020
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!
Sarah Coff Admin
April 20, 2020
How old is your little one? I'd love to hear more about her. Take care, Sarah, Cystic-Fibrosis.com Team Member
April 20, 2020
She is almost two now, beautiful, fun and smart little girl! My dream come true!
Sarah Coff Admin
April 21, 2020
Janeil Whitworth Moderator
June 11, 2021
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
8 days ago
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.
7 days ago
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)