I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
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It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Sometimes, being the “squeaky wheel” is the only way to make a positive change.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
Because transplant is such a complex process, most transplant centers require that candidates gather the necessary social support to help navigate the transplant process.
Halloween, April Fools' Day, and Mother's Day may be average American holidays for most, but for me, they mark three important days in my long, emotional journey toward a new pair of lungs.
As a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.