My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
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Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.
In the 26 years since my double-lung transplant, I’ve lived through cancers and other post-transplant complications. It’s been difficult at times to remain positive, but I won’t give up. I’m a fighter.
I had double-lung and liver transplants 16 years ago. Although nothing is guaranteed after transplant, here’s what I’ve learned maintaining my health after transplant.
A lung transplant may be a treatment option when your diseased lungs can no longer support your body's needs.
To be considered for a lung transplant, you must undergo an extensive evaluation at a transplant center. The process can take several days to several weeks, depending on the center. This evaluation will inform the transplant team about your health, finances, support system, and ability to follow a complex medical regimen.
If the transplant committee thinks transplant surgery would be harmful to you, ask your transplant team about what options you have. It is possible that you will need to receive treatment for another medical condition before you may be considered a good candidate for a lung transplant.
The legislation would impact the health care coverage of millions of Americans, including people living with cystic fibrosis.