One of the Our Cystic Fibrosis Journey youtubers reached out to us letting us know the following:
“Sorry all, due to differences in the group the channel is no longer active. The original group creators have also decided to delete all of the content that was on this channel. Very unfortunate, and hoping to bring back something like this in the future.“
There is currently no cure for cystic fibrosis (CF), but there are treatment options for the chronic and progressive disease. When the treatments are no longer effective and a patient’s lung function is very low, lung transplant may be an option. While each patient has its own opinion on lung transplant, the CF patient, blogger and exercise enthusiast Larry Brian discusses the option.
“Bear with me because I’m pretty passionate about this topic. It drives me crazy and I will explain why,” said Larry Brian. “I got evaluated for a lung transplant when my lung function was at 26% and it’s pretty hard to breathe at that point.” The blogger also reminded us that patients who are cleared to receive a lung transplant need to wait in a list, which means that numerous patients die waiting for a lung transplant.
The video was posted on a YouTube channel called Our Cystic Fibrosis Journey, which is a six-week-old project that works in collaboration with cystic fibrosis patients and bloggers. In addition to Larry Brian who posts on Wednesdays, the group also includes Shianne on Mondays, Taylor Puckett on Tuesdays, Miranda Porche on Thursdays, Bailey Ann Vincent on Fridays, Megan on Saturdays, and Siobhan on Sundays.
Stay updated on all the latest CF news here: http://bit.ly/1jNDqsz
Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.