For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.
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To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
The physical and emotional toll of CF can sometimes make me feel isolated from my peers. But I’ve learned being vulnerable about my struggles can create stronger relationships that make me feel supported and loved.
The CF community supported me so much during my two double-lung transplants, so I’m eager and excited to give back. One of the ways I got involved was by becoming a mentor, which is how I formed an incredible bond with my friend, Brittani.
As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.
With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.
When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.
When I lived with advanced lung disease, I never expected to feel good again. But after receiving a double-lung transplant, my whole world changed.
Living with an illness like advanced lung disease can be incredibly isolating and limiting. But I’ve found a way to connect with others and make my own adventures through online gaming.