So You've Been Diagnosed with Pulmonary Fibrosis...What's Next?
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- Опубликовано: 28 июл 2024
- If you or someone you care about is living with pulmonary fibrosis this is a must-watch explainer video. It can be overwhelming to receive a pulmonary fibrosis diagnosis, and until you become involved with the pulmonary fibrosis community or clinic, it can be tough to learn about this disease.
Pulmonary fibrosis (or PF) is the common term used to describe a large family of diseases that cause inflammation and scarring in the lungs. The medical term is Interstitial Lung Disease or ILD. Watch this video for a quick overview.
In this CPFF educational video, Dr. Charlene Fell explains in an easy-to-understand way, what pulmonary fibrosis is, what you can expect, and how to manage the disease so you can live life as fully as possible.
Dr. Fell is the founding chair of the Canadian Thoracic Society’s Clinical Assembly on Interstitial Lung Diseases and the Director of the University of Calgary Interstitial Lung Disease Program and has dedicated her research efforts to unraveling the mystery of IPF and making a difference in the lives of patients and their caregivers living with the disease.
I was cried watching this video, so true when it hard to explain about our health condition to our fmly...n others. Like nobody can understand u. 😢
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.
true
I’m so sorry, I might have it too, stay strong minded
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 ❤
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 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 resources - nice to see so much more information than when my Dad was diagnosed 15 years ago! ❤
Thanks Jennifer!
Excellent video.
Glad you liked it!
It's true 🙏😔
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.
Please help my daughter with ILD
I was crying hearing that i was diagnose with PF...pls someone help me.figure it out.
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’m so scared I’ve got this 😢
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.
u r not alone
I know the feeling I will find out if I have got it soon . Like you I have loads of questions but getting no answers
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/
Please tell me when you find out. My doctor won't help me. Im so lost and confused
My oxygen is 50% low and I'm using 4 Leaders of oxygen while walking