The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
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I was diagnosed with cystic fibrosis late; and the anger I felt was contagious for my son, who was dealing with his own diagnosis. But, I found support and am now focusing on the things in my life that I can control.
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When my four children were young, it was important for my husband and me to protect their sense of security. We did what we could to reduce their fears about my frequent hospital visits and even make it fun for them at times.
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I’m still trying to define who I am after a double-lung and liver transplant five years ago. Although I am much healthier, I sometimes still struggle with my physical and mental health, and I don’t know what I want to do next in my life.
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After my partner was diagnosed with cystic fibrosis, I had to learn how to support her and keep myself from getting rundown. Over time, I have learned that doing small things, such as ordering medicines, can be enormously helpful.
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Being in and out of the hospital and unable to recognize my own body was taking a toll on my mental health. But after my liver transplant, my family stuck by my side and helped renew my positive outlook on life.
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At 26, I was in and out of the hospital with bouts of pain and coughing up blood, with doctors telling me I had pancreatitis. It took a trip to a new hospital — and advocating for my health — before I finally got my correct cystic fibrosis diagnosis.
