When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
Site Search
When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
Although they have been full of physical and emotional challenges, as well as life interruptions, multiple transplants have helped me become the person I am.
Deciding to get on the double-lung transplant waiting list was a very difficult decision, emotionally. I was lucky my care team recommended early referral. It gave me the time to process my emotions about transplant and make an educated decision.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
After my social media post went viral, I finally found my lung donor's family. The emotional meeting with them brought a confusing mix of happiness, grief, gratitude, and survivor's guilt. I received lungs because my donor was killed in a shooting.
Although I went through a lung transplant evaluation, I decided not to be listed.