In Conversation with Barbara: What is Idiopathic Pulmonary Fibrosis?
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- เผยแพร่เมื่อ 1 ส.ค. 2024
- Barbara was diagnosed in November 2010 with Idiopathic Pulmonary Fibrosis (IPF). We had the pleasure of speaking with Barbara about her journey since her diagnosis and addressed common questions IPF patients about living with IPF.
This video was created by HTH SCI 4DM3 students: Breagh Cheng, Anjali Periyalwar, Kirat Boparai, Mankeeran Dhanoa
Copyright McMaster University 2016
#DemystifyingMedicine, #IPF
Excellent informative video, anyone with this diagnosis should watch this, it's exactly how everyone should approach this disease.
This was a wonderful video. I thank Ms. Barbara for sharing what she knows and what she has experienced with all of us. My mother in law has this now/ newly diagnosed/ so I am trying to learn as much as possible about this..to help her.
My husband was diagnosed with this in July 2016 and he passed away August 2016. There is no cure, this is worse than cancer.
We didn’t get a diagnosis for my dear late husband until 6 months before he passed. Even then, it wasn’t until the autopsy that IPF was given as the definitive diagnosis. He was only 63 and I miss him dearly.
Very well done...and for the most part I agree with what was said....but I would have liked for her to have expanded on her signs and symptoms like,SOB, dyspnea, easily fatigued, light-headedness, etc...that for so many years that the only treatment was lung transplants, but now there are drugs that will put the disease into remission...and a plug here for being an organ donor would be ideal...but now there are drugs, that when used in the early stages, have proven to be beneficial...I was diagnosed in Jul 2013 and hope and pray that I can extend this for as long as she has done...thank you for this video.
Are you stillok??
Thank you for this inspiring video
I want to thank you for the time you took to explain this medical condition. Job well done....We found out today my husband for sure has this chronic medical condition.. He is 50 years old.
Hola puedes hacer el favor y ayudarme con la información no se inglis y diagnosticaron esta enfermedad
Very good video. Best of luck in the future. Thank you.
Thank you Barbara. This testimony has helped me view my disease. I also have cancer that I am undergoing chemo for.
This woman has a very positive & philophical attitude. No "woe is me" attitude. When I first learned what I had, I surprised myself at how stoical I was. No anger, no "why me?" Just "Ok, so what can I do about it"? That was over 3 yrs ago, and it has been very tough slogging, complicated by side-effects. Many times I was sure I was near the end, but I have had great support from some excellent doctors. Try to take one day at a time, and enjoy the few things that I can. A talk given by a palliative care nurse at our support group was very helping in overcoming fear about the "end game". Now I have my own palliative care nurse, though I'm not in an hospice, and she is so great! Luckily I am in a long-term care facility and I spend most of my time sleeping. I have O2 24/7. It is my "life-line". My abilities are diminishing, but thats ok. This is a great video, esp, for newly diagnosed patients. A support group is awesome, just to be with others who "understand". I wish you all well.
Thank u for sharing your video,i have learnt much from it.God bless u.
My husband was diagnosed in April 2016 and pasted away July 28, 2016. He was put on Esbriet but it seemed when they up his meds. to 2 tabs three times a day he became worse. He was only 67 and passed away on our 44th wedding anniversary. This is a horrible disease.
Gayla Trusty so sorry,my hubby was diagnosed 10years or so, very early...he’s now requiring Oxygen PRN ( as needed)it didn’t take long to diagnose. I’m enjoying the time left xx
So sorry I was diagnosed 2.5 years ago. They wanted to put me on Esbriet but after reading about it and thinking it over I told him I thought when my work here was over I'd go home. He looked at me without saying anything til it was about to be uncomfortable. Then he said I do too. God Bless
@@jeanwillis7774 He had IPF for 10 yrs, did they not offer him a lung transplant. When my hubby was diagnosed the consultant said usually life expectancy from diagnosis is no more than 5 yrs, with a lung transplant it can be extended by 5 yrs. My husband’s was very aggressive and he was gone within 3 weeks of diagnosis, you have been blessed xx
How are you doing, Barbara?
Thank you!
Barbara, thank you for taking the time to make this video. This is the best explanation of IPF and what actually happens to those who have the disease. The disease itself is very frustrating, and it effects each person differently. My frustration was not being able to do what I was use to, e.g. Golf, I use to walk 18 holes carrying my bag and play daily. Not realizing why I just started to carry less clubs, then stopping on the hills to catch my breath next having to ride in a cart. At the gym, walking on a treadmill you want to do more or walk longer you just don't have the energy to physically do it. Yes, there are new drugs (not available in all Canadian Provinces) that may for some slow the progression of the disease, but there is no remission of the disease from drugs. Exercise as much as possible, try to do your 10,000 steps, push as much as you can as long as you can. I hope that you can. Good Luck
Stephen Binch l
Stephen Binch: Good luck to you too.
Can you tell me please the exercise you do?
the content is valuable info, but that loud irritating piano is unneccessary and makes it difficult to hear what Barbara is saying.
No entiendo inglés alguien puede ayudarme con lo que dice la señora y los consejos que aduria ha la enfermedad
Can I have the name of the drug as well as tools in the toolbox! I also have pulmonary fibrosis and it recently progressed. I'm trying to research this as doctors are surprised with my younger age.
The drug OFEV has helped my husband
Thank you this is video is very informative and inspiring!
How is Barbara dong ?
Why the piano? So inappropriate.