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. 😢

@CPFF

Жыл бұрын

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.

@ayushgarg7033

Жыл бұрын

true

@silviaroberts9514

Жыл бұрын

I’m so sorry, I might have it too, stay strong minded

@Flametwin1111

9 ай бұрын

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.

@CPFF

11 ай бұрын

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.

@CPFF

9 ай бұрын

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.

Excellent video.

@CPFF

11 ай бұрын

Glad you liked it!

Great resources - nice to see so much more information than when my Dad was diagnosed 15 years ago! ❤

@CPFF

9 ай бұрын

Thanks Jennifer!

Please help my daughter with ILD

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.

@CPFF

Жыл бұрын

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/

@jacquelinedube1069

10 ай бұрын

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.

I was crying hearing that i was diagnose with PF...pls someone help me.figure it out.

@CPFF

Жыл бұрын

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

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

@CPFF

2 ай бұрын

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/

@believeringod.4004

2 ай бұрын

Please tell me when you find out. My doctor won't help me. Im so lost and confused

I’m so scared I’ve got this 😢

@CPFF

Жыл бұрын

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.

@ayushgarg7033

Жыл бұрын

u r not alone

@paulcarruthers2431

Жыл бұрын

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

My oxygen is 50% low and I'm using 4 Leaders of oxygen while walking