Why I Don’t Remember or Celebrate the Date of my Double Lung Transplant
– By Tina Clarke Most people with CF who have received a double lung transplant know the date nearly as well as they know their birthday and they celebrate it with cake, balloons or gathering with loved ones. My strange truth is that I don’t even remember the date of …
No Longer 18 Years – By Ashley Wilson
“She might make it to 18 years old if she is lucky.” “She might make it to 18 years old if she is lucky.” This is what the doctor told my parents after finally receiving a diagnosis for my failure to thrive as a baby. At 6 months old I …
Does Medicare Cover Lung Transplants?
Learn more about how the various parts of Medicare pay for treatment before, during and after a Lung Transplant. Article written by Danielle K Roberts, co-founder at Boomer Benefits, a licensed insurance agency that helps baby boomers navigate Medicare in 47 states. *** Lung transplants are complex surgical procedures which can …
Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment
Struggling to cover the cost of air travel to receive your medical care? Miracle Flights assists patients through free commercial air travel to obtain special medical care. Read more about this fantastic organization and how to apply below… Blog article written in conjunction with Brooke Freeman, Community Outreach Officer …
Lung Bio-engineering Clinical Trial may benefit cystic fibrosis patients
EX VIVO LUNG PERFUSION During an organ transplant, time is of the essence and Ex Vivo Lung Perfusion is no different. Lungs are explanted, evaluated, and shipped as quickly as possible to our specialized EVLP facility. The EVLP team works around the clock to assess the lungs, share data with …
The Bible for Transplants: make data driven decisions about lung transplant
The Scientific Registry of Transplant Recipients (SRTR) helps patients make data driven decisions about their transplant, such as lung transplants in Cystic Fibrosis. Lots of great information in The Scientific Registry of Transplant Recipients (SRTR) The registry supports ongoing evaluation of the status of solid organ transplantation in the United …
Organ Donation – Surprising Facts
Cystic Fibrosis patients make up 12 percent of the waiting list for lungs. New York State changed the legal age of consent for organ donation from 18 to 16 years old to improve number of donors. Read more below: Last week, New York State changed the legal age of consent …
Cystic Fibrosis treatment: lung transplant facts and member experiences
Lung transplantation is something a person with Cystic Fibrosis might consider late in the progression of the disease, when life expectancy is about 1-2 more years and quality of life is severely compromised. It is a last resort in terms of Cystic Fibrosis treatment, but can be a life-saving procedure. …
Documentary: Sisters living with Cystic Fibrosis
Olivia Shivas from Attitude Pictures in New Zealand wrote to cysticfibrosis.com about a documentary series her organization has created that explores the lives of people living with serious health conditions and disabilities. One of their documentaries is about two sisters, Kristie and Nikki, who are young moms with cystic fibrosis. …
3D Printed Ear, Bone, and Muscle Tissue
It sounds like science fiction, but it’s not: 3D-printed human ear, bone, and muscle tissue have been implanted in lab rats and successfully grew their own blood vessel networks. We’ve been hearing about this for a few years now: different groups of researchers working on 3D-printing processes and materials that …