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?
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!
How old is your little one? I'd love to hear more about her. Take care, Sarah, Cystic-Fibrosis.com Team Member
She is almost two now, beautiful, fun and smart little girl! My dream come true!
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
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.
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)