Bolton Pulmonary Fibrosis Support Group was formed in 15th February 2018. The group supports people who live with Idiopathic Pulmonary Fibrosis (IPF), along with their families, friends and carers. Pulmonary Fibrosis is a terminal lung disease, which has a life expectancy of 3-5 years from diagnosis. Idiopathic means unknown cause, as there is no unknown case there is, at present, no known cure. Lung transplantation is the only option open, but not everyone is suitable to undergo a transplant. The purpose of this channel is to provide as much as much knowledge and information to help improve the quality of life for each and every individual
Thrilled to find you! I saw your testimonial . My husband is 59 and has IPF. I will continue to follow you. Thanks for sharing! He has been taking OFEV for 6 months. Did you take before your lung transplant ? And, how are you? Keep up the great advocacy work!
I am quite fortunate and regard myself as stage 1 after getting diagnosed October 2020, apart from the one and only exacerbation which lead to the diagnosis, I do not suffer with breathlessness, (despite having a 33% lung capacity), since diagnosis, I have exercised extremely hard, my current regime is about 12 - 14 hours a week. However, I support all tools and facilities to help those that are suffering under the huge umbrella of COPD. Your vid/app seems very good, I will learn more about it. Obviously as I am only affected by breathlessness through hard exercise. My mental health is good.
Thank you for your positive reply. We have introduced Singing for Lung Health weekly sessions for our members. They were hesitant at first, when we suggested introducing it to the group. We have around 15 members in the group and they love it. So many have said how much it has improved the breathing and breathlessness in only a few weeks. So I have to agree this is wonderful.
It is an excellent Program, not only does it improve your breathlessness and breathing. It is great fun and certainly lifts everyones spirits. Please feel free to contact me at Steve@boltonpulmonaryfibrosis.org if you would like further information.
This is our most popular video, it is perfectly safe to wash your cannula's in soapy water, provided the are thoroughly rinsed and allowed to completely dry before use.
