The Canadian Pulmonary Fibrosis Foundation (CPFF) provides support for all people affected by pulmonary fibrosis (PF), and is the voice of patients living with PF.
Pulmonary fibrosis (PF) is an interstitial lung disease that affects an estimated 30,000 Canadians, with a projected 5,000 deaths each year. In patients with PF, the lung tissue becomes scarred and over time, thickens and becomes more widespread. In turn, the lungs lose their ability to transfer oxygen to the bloodstream, resulting in shortness of breath and vital organs being deprived of the necessary oxygen to survive.
Pulmonary fibrosis is a life-limiting disease that can affect anyone. It impacts the lives of not only those who have the disease, but also, their families. There is an urgent need to better support people living with pulmonary fibrosis. Together, let's build hope, awareness, and funds. Because breathing should never be hard work.
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/
Hi there, to learn more about autoimmune diseases and pulmonary fibrosis you can watch this video featuring rheumatologist Dr. Janet Pope. cpff.ca/on-demand-videos/sessions-2023/ild-in-rheumatoid-arthritis-scleroderma-other-connective-tissue-diseases-dr-janet-pope/ We also suggest you talk to your primary healthcare provider for more information.
Thank you, you explained that very well and made it simple to understand. I would love to be able to do some exercise. walking etc but I also had a broken hip, DDD, Osteoarthritis, Osteoarthritis, Aortic Stenosis and the bones in my spine are so thin I've been told by my doctor could break at any moment. Could you please advise? Many thanks. I also was hospitalized in 2021 critically ill with Covid for a few weeks and I ended up with Pulmonary Fibrosis. I have always been active i,e, teaching dance etc and now I am mostly on the bed,
Hi there, we're sorry to hear about all of the medical challenges you are experiencing. Regular exercise and a healthy diet can help you maintain or improve your overall well being, while living with pulmonary fibrosis. It's important to check with your health care professional before beginning any new exercise regime especially given your bone health challenges. We suggest you work with your doctor and seek out a pulmonary rehabilitation program where you can exercise under supervision. You can find more information on our website here: cpff.ca/understanding-pf/living-with-pf/nutrition-and-exercise/#exercise and you can also join the PF support groups to learn how others are managing their journey cpff.ca/get-involved/support-groups/
I had a dr perform a bronchoscopy in August 2023 and he was unable to get a tissue sample because the lymph node was a bit on the hard side and the needle kept bouncing off of the node. Then in October 2023 I underwent a day surgery where I had a lymph node at the base of the neck and sub clavicle region was removed for sampling. The test results came back a month later and I was told the results were non necrotizing granuloma/sarcoidosis.. I was asymptomatic until 2017 when I passed out when riding a bike and then given a hint in January 2019 that I would require avr. Makes me wonder if I had the granuloma/sarcoidosis before the heart surgery or the complications from the surgery such as having pneumonia may have triggered the granuloma/sarcoidosis.. Watching your video gives me thought and questions to ask when I see the specialist hopefully next month to learn what the next step is in treatment.
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.
Great walk today - thank you CPFF for keeping Robert's story in our hearts and minds and continuing his legacy for the benefit of those whose lives have been touched by Pulmonary Fibrosis. He was a great inspiration to my Dad who also passed in 2019. I know they are cheering us on today! ❤🩹
Jennifer, it was great to see both you and your husband at the Robert Davidson walk for pulmonary fibrosis. It is heart warming to hear how much impact our founder Robert made in so many lives - and we strive to carry on his passion for supporting those affected by PF. Thanks so much for helping us to build awareness, hope, and funds.
I am not sure if you're a Christian and nor do I intend to force this upon you. But I am a Christian and I feel obliged to share with you the option of spiritual healing. The link is a video of a healing prayer. It's your choice to follow the link to follow the prayer to seek divine healing from God. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-t6Vz-raddi4.html God bless.
Hi there, you can find more information about pulmonary fibrosis in the latest patient guide: cpff.ca/wp-content/uploads/2023/04/04.03.2023-CPFF-Patient-Guide.pdf. Every person living with this disease has a unique journey and it's best to discuss your individual situation with your healthcare provider.
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.
Sorry to hear this. CPFF has a number of great resources at cpff.ca including support groups for both people living with PF and their caregivers, PF patient guide, patient videos, provincial resources and much more. We hope these resources can help you and your husband navigate his PF journey.
If doctor"s know that you have pulmonary fibrosis, why won't they start us on medication to slow the progression early instead of the wait and see what happens approach? Hey doctor! You have time to wait and see to make your final diagnosis once the damage past the point that the meds would have bought us more time. You're not the one who is dying!!! We are! And guess what... You have no idea what it's like for us mentally and emotionally, let alone physically! Oh, you say you know because you see us once in a while, NO YOU DON'T! Your whole life is not going to be cut short.There is no way you can know until it's you!
Je crois que je suis le premier au monde à savoir travailler la fibrose respiratoire qui est dans le muscle profond pectoral et diaphragmatique, et pas ou très peu dans les poumons !
I don’t know Paul you’re walking around I am barely get off the couch oxygen and all the stupid medications took a year to diagnose me I can I get off the couch maybe three times a day it’s hell I can’t breeze my hair is falling out no medicine is working
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
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.
Sorry to hear this Abhishek. This is a devastating disease for both patients and family members. CPFF offers many PF educational resources, patient support groups as well as caregiver support groups. You can find them on our website here cpff.ca/
I also have Fibrosis and COPD they gave me 2 to 5 years to live went to testing for a lung then I stopped God will call me when he is ready. Just want to see my children out of school and a good job on their own Bless the ones who are sick
Hi Celina will do. We invite you to join our webinars to learn more about PF and caregiver support groups. You can explore them here: cpff.ca/events/list/
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 ❤
Hello Christina, we hope that palliative care can provide you with the support you need. CPFF also offers many PF educational resources, patient support groups as well as caregiver support groups. You can find them on our website here cpff.ca/
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.
All thanks to Dr Madida on RU-vid for accepting to help me the first place, he indeed cured me of my IPF(Idiopathic pulmonary fibrosis) with his herbal medicine.
