Human resources veteran Massenburg brings more than 20 years of leadership experience in nonprofit and business sectors
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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.
BreatheCon is a unique event to virtually gather with other adults with CF in a welcoming, inclusive space where you can be your authentic self.
BreatheCon is a unique event to virtually gather with other adults with CF in a welcoming, inclusive space where you can be your authentic self.
This annual meeting brings together scientists, clinicians, and caregivers from around the world to discuss and share ideas on the latest advances in CF research, care, and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.
My parents made sure that I enjoyed my childhood despite my health struggles with cystic fibrosis. They focused on making sacrifices and hard decisions, such as relocating to be near my clinic, and never letting me brood over my prognosis.
The road to recovery after a lung transplant can be long and arduous. It took me awhile to appreciate all the benefits, but I am blessed with the ability to breathe and a new-found confidence that has emboldened me to try new things.
Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.
Since my kids were born, I’ve had two lung transplants and spent months in the hospital at a time for cystic fibrosis complications. It’s just as hard for my kids to go through as it is for me, so we make sure we talk about my CF openly as a family.
My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.