We understand how hard it is living with pulmonary fibrosis and hope this video gave you some tools that you can use to help educate others on this very challenging disease.
My dad has longfibrose, I see it on other family members.If you don't look closely and not pay attention its easy to underestimate this disease.Its really sad to see other family not check in daily or come by to help out or just show love and care.(I don't talk with my dad about it because I hope he don't see or feel it. I wish u all power and strength ❤
Diagnosed with IPF in 2020 and I'm only GETTING BETTER! Praise the Lord! I also adopted the Carnivore Diet and my health has improved. DON"T BELIEVE THE HYPE! WE will NOT surrender to this disease!
I got diagnose with ILD NSIP this July , initially I was anxious for couple of days , because my brother passed away at the age 31 in October 2019, he was diagnosed with this disease in May 2018, but I m being positive, I m immune suppressant MMF S 1080 Mg and omnacortil 20 mg, I do breathing exercise, my oxygen does goes down while I m active between 88 to 92 and in resting mode it is 98, let’s see how long will I live, but I have decided I will live happily.
Hi thanks so much for sharing your experience. Your positive attitude is inspiring and will go a long way in helping you make the most of each day. The Canadian Pulmonary Fibrosis Foundation leads support groups for people living with PF /ILD and many have found this very helpful. You can find a support group in many Canadian cities here: cpff.ca/get-involved/support-groups/ or join the ongoing virtual national support groups here: cpff.ca/cpff-events/. There are also many informative educational webinars and inspiring patient stories here: cpff.ca/patients-and-caregivers/pf-resource-library/video-library/. I hope this helps you along your journey.
Thank you for publishing this video - my wife has PPFE, which is slightly different and the rarest of the lung diseases - she has the best consultant and is regularly checked - has a really positive exercise regime, and chest infections are common. Our more local consultant who she see's occasionally - just in case we need to drop into the local hospital - when first confronted with her condition, apologised and looked sad - clearly she knows what is to come. Thankfully, and I hope this arrives as a positive message for many with these rare and unexplainable conditions - she first got ill in 2016, took until mid 2018 to diagnose - and is still considered to be mild. Although her gas transfer capacity has dropped to around 80% over the last few years. A sign of things to come I suspect. I encourage her to exercise everyday - she eats really healthy, weighs in every day too, and we walk together for four miles - we have good days, and we have bad days - in the darkest part of winter she misses the occasional walk owing to chest infections or being off colour. I suspect while she is 52 now, she will not reach retirement, and her occasional breathlessness is a worry when it occurs. There is less known about PPFE, than other forms of ILD.
Thank you for sharing your wife's journey! It is challenging both living with a rare disease and supporting a loved one. It sounds like you are a wonder advocate for your wife's health.
I just feel scared at the moment I don't know if I have got it or not .got one more test . They lungs are clear but I have scarring. So perhaps I have something controllable fingers crossed.
Hi Paul, we are hoping along with you. If you feel you could use more useful PF information or access to support groups you can find them on our website: cpff.ca/
Hi Paul. Did you get a diagnosis? I am in the same boat as you right now. I have scarring of the lungs but my lungs are clear but I do get tightness in my chest if I exhale too much.
Hello doc u have minimal pulmonary fibrosis, I’m 32 years old. What medical i take? How many months to take of medicine? I have to chance to healed my minimal pulmonary fibrosis or not? Thank you
Hi there. Each patient's journey and treatment is different. Please check in with your primary care physician on the treatment that best meets your needs. You can learn more about treatment and care here cpff.ca/understanding-pf/treatment-and-care/
Hello Rodgen, CPFF has a very supportive community. We offer both national and local support groups where you can connect with others who are living with PF. Please check our website for upcoming virtual national supports cpff.ca/events/list/ AND check our support group page to find a local group in your community cpff.ca/patients-and-caregivers/#groups . We hope this will help you feel more supported
Hi there, this is definitely a challenging disease. If you suspect that you have pulmonary fibrosis, don't delay and please speak with your doctor to express your concerns. Hopefully this video and the many others that have can also help support you on your journey.
