What is the Life Expectancy of Idiopathic Pulmonary Fibrosis?
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- Опубликовано: 1 окт 2024
- Dr. Naveed Shah, MD, speaks on Idiopathic Pulmonary Fibrosis and tells you a patient story that you have to hear.
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I have this disease . My doctor says each person life expectancy is different. I was diagnosed 1.5 years ago but I had symptoms for 2 years but was told back then, its allergies . As you get older I guess allergies come on. I never had allergies never smoked Blah Blah but I have this now . I am spending my day working out at PF and trying to complete one project after another at my home. My goal is that when I leave, my home, is in the best condition it can possible be in for my wife (46yrs May 28) . We are also practicing on all the mundane stuff I did in our marriage that she seeded to me LOL. Simple things like paying the bills through the bank and bills that you have to pay by check. We have visited funeral homes and we are making a list of What If it was today? What you need to do , not too detailed because your feelings change. I am being evaluated for a transplant but feel this may not be what I want . God is handling the details . Bless you in your journey . Ronnie may 24/23
God bless you 🙏 ❤
My dad just passed away from IPF this week and he could not even walk across the living room near the end he. sorry for hearing you have this IPF
@@jeremyb456 juts going through this with my dad hes waiting to pass now at the hospital as i type this
Feel you! Bless you for taking care of your wife 🙏
Praying for you..!! Let there be miracle in Jesus name.
I was told in Jan. 2019 that I had 6 months to 2 years to live, still here and doing good. I am on Ofev, 1000 per day. Fight to the end.
Awesome🎉
Very good
A 1000? I can’t even take 300 a day w/o being sick
If you don’t mind me asking, do you get your liver monitored? My Grandpa was on OFEV and went into Cirrhosis and end stage liver failure after being on it for 2 years.
@@mrmanown yes I do
Well , that was incredibly anxiety making, starting of with well, life expectancy is not good.. but one guy started travelling etc and he s still here. Seriously, perhaps you might want to rethink how you are presenting this . Or better yet take a refresher course on dealing with patients using sensitivity.
The outcome is not good. I just did something less than 30% do and that's live 5 years. Some do live much longer and some do not. I was told what I had at the doctor's office. Never had heard of it, get home and Google it, and find out the average lifespan is 2 to 5 years. I had a bit of a problem with that, but there's just no good news, except Heaven at the end.
My grandma was diagnosed with IPF for over 15 years. What did she do: Not taking the "most important" medication she was told for like 14 years 😂 and not using oxygen for like 8 years.
She has outlived all his doctor's patient and like for 2 cycles.
Awesome 👍
Ninguem espera para morrer que pessimismo.Lute essa doença e do demonio mas naõ se esqueça que acima dele ah um Deus de poder .Lute isso pra Deus naõ e nada
Thank god, my husband was diagnosed today and I’m so scared of what can happen. Blessings to your grandma.
wow
Yeah that's awesome
God has predestined our expiration date. Don't worry about it. Enjoy your life!
This is reality 😂😂
People say "fight to the end". Why? I've seen too many try to do that only to make themselves more miserable. I don't want to do that. God has me in His hands. I'll go when He feels it's my time. I have had IPF for 3 years. I am not taking Ofev or Espriet & don't plan to. No thank you to the rough side effects.
6 years ago I was diagnosed with PF after living with rheumatoid arthritis for 5 years. The RA I can cope with but the PF is a challenge. I retired from full-time work and took up a hobby that interested me. I now design and build electric bikes. Up until 3 months ago I was feeling fine but after a bad cold and chest infection, I have lost energy but will keep taking the meds and see if I can get another Christmas in, only 6 months away. By then I will have launched a mobility e-bike for fellow sufferers who can use an e-bike designed to help with their mobility but doesn't look like a disability cart. every day is a blessing and having something to look forward to really helps, as does a supportive family. I am lucky. Maybe if it goes well I will try for another Christmas after the next. Enjoy the hand you were dealt.
My dad is been taking ofev for maybe eight months and he just had a checkup this week he had been feeling quite a bit better and the doctor joked that my dad could be the spokesperson for ofev. This medication intention is to slow down the progression but in my dad's case not only has it slowed down the progression he's actually breathing better now then before he started treatment. And hearing that from the doctor has given him a mental boost did he needed as well. The side effects of this medicine can be tough but just know there is hope and hang in there y'all
Yeah my dad has it too but the medicine has slowed down the progression
Would it possible to mention the name of this medication your father is taking ? I do have IPF diagnosed 2-1/2 years ago also and I'❤m on oxygen therapy 24/7 since. Thankyou😊
@@jimmierasmussen9298 ofev
Are you blind? It says he's taking ofev. Learn how to read before you die
@@RaiRai214 How mean of you to say that! Im a patient of pulmonary fibrosis myself. Remember God is listening. So EVIL!!!!!
This video gets a thumbs down. It's so discouraging. You should never try to dictate anyones life expectancy. That's God's job! Furthermore everyone is different and alot of this ILD info is outdated. My dad lived with pulmonary fibrosis for over 10 years. I have hypersensitivity pneumonitis which falls under the catagory of ILD as well. It's not easy but I fight through this journey everyday and I refuse to let a doctor give me an expiration date.
But you believe in a mythical 'GOD'??
right he is so negative doctor bastard
Only God knows. I'm still here.prsise god.
My second eldest sister only had 2-3 yrs left.,That really scared me cause I depended on her for many things in life. She was like my second mom, cause she was similar to my actual mom. I still find it hard to believe that she’s gone. Way too many people die from this disease! My heart ♥️ goes out to everyone of you individuals who have it or have lost someone who died from it. You’re not alone 1iota! This world isn’t the end for you if you give your life to a LOVING Jesus Christ who gave His life up for you alone! You’re that precious to Him! 🙏 Pray about your feelings & express yourself He can take it. He understands better than anyone else what you’re going through & why. My very best wishes sent to you all in this really hard time/situation. ♥️
I just completed 3 weeks of umbilical cord stem cell transplants in Bangkok to deal with my ipf. The treatment completely worked and reversed the scarring add regenerated my lungs. I no longer have symptoms
@@emptynestingdad1WoW that is amazing how can I get a do for in bancock?
Idopathic just means unknown cause ,my dad had pulmonary fibrosis brought on by heart medication amidrone.
How?
I was told I have this, when I got kidney scan 2 years ago. They said it was no big deal and my new doctor won't listen to me. I'm in pain. My new FP doctor put an order in for me to physical therapy after I told him the pain is coming from under my ribs and left shoulder blade. It had eased up quite a bit for a month or so, but now it's hurting really bad with inspiration. I've never smoked either. I have always hated cigarette smoke since I was 5 years old and my parents smoked in the car.
I’m
Afraid as things get worse for my husband they are not going to treat anything else like the pain that comes mostly in the morning. I feel ppl with a disease not curable should be able to have pain management. Atleast they can chk for other things that could still arise. But think they don’t
This is not the video to click on when you’re told for the first time you have this. I just came from the ER last night after 3 weeks of gasping for breath, a dry cough and no response to any meds my dr gave me suspecting I had asthma. I have never had respiratory issues before. I do have Lupus though. My CT scan at the hospital showed significant scarring throughout my lungs. I’m only 40 with three young children. I’ve never been a smoker. I’m an RN so I’m not in a job where I’m exposed to hazardous particles like construction or farming etc.
I’m devastated. I don’t even have a pulmonologist yet and haven’t seen my rheumatologist in a year since I thought my Lupus was under control.
Praying against all odds my news from specialists will give me more hope as the look on the ER doctors face did not give me much. I’m on oxygen around the clock already while I await referrals…..😢
No it’s good . Do as much as you can, bucket list. Husband diagnosed in February. By September,walking swimming became too much. He passed 2 weeks ago. Even on the medication Ofev. Too fast.
@@Berrylucy50 I to have been on OFEV for some 6 month's now and know my time is near and Im 60 yrs old. Hope your husband didn't suffer painfully?
I too am a health care worker, and those "blue medical masks" have graphene in them which causes the same symptoms as asbestos exposure.
Hi Meghan how are you today? I am in the same situation as you. Devastated to say the least.
Diag. at 6 months ago at 60 yrs of age. I cried for days and days and have finally come to terms with it. Im not here to comfort you or lie to you I just want you to know your not alone and and don't be scared or afraid and dont fear the unknown there's nothing to be afraid of seriously. If have any questions feel free to talk, make jokes, enjoy what's left. Life is as beautiful as it is cruel and I'm grateful to be a part of it and witnessed it. The only hope I can give you is do not be afraid of dying. Again if you have any questions, thoughts, ideas, feelings, comments feel free to ask.
My name is Monty. There's nothing to fear Meghan.
@@Teenagegoogoomukstay strong ❣️
Numbers of lung function tests tells alot about your lungs
Ofev hit my husbands kidneys and lungs within 3 months. I’d like to know what to expect. The man who traveled that’s quite amazing. My husband been on oxygen since diagnosed does good to get to 100 feet. But doing pretty well. All his nutrients are dropping. I’m scared everyday. I wish there was a way to find out what to expect. Thank you
My wife was diagnosed with PPFE in 2018, after 2 years of breathing challenges. Her lung function test has gone off slightly, but her condition is still considered mild. However, they have said when the tests decline further, it could speed up.
I am scared, and I know we could have a few years more yet - I take everyday for its worth, enjoy the high points of life, and we are cramming in many memorable experiences. I know she wont make retirement which we had always planned for.
Be kind to yourself, and look after your husband to the best of your ability. We can do no more than that. And yes - its shit.
I've lived 5 years with IPF, and I chose not to take either of the 2 medications. Have been on oxygen 24/7 and have gotten worse especially the past year. There are alot of articles about what to expect and I have read everything I could get my hands on. It was important for me to know what was to come. The most important thing I did was some soul-searching. I'm not afraid to die at this point. I feel blessed to have this long goodbye with my loved ones.
@@DS-cf1zc thank you for that. A little hope my husband about 20 months in after being diagnosed. I live in fear every day. I’m
Not living life to the fullest. I wish I could be a person that takes and appreciates each day. So scary
@@jimwilson9371 thanks for your comment. Any changes in my husbands health is terrifying. His blood pressure low then high and in between. No appetite 😞
@@cskiles318 Be kind to you - Liz and I plot our memories - so concerts, holidays where we can etc.
To give you flavour of what I mean
between now and early Jan we have booked:
3 top concerts,
2 theatre nights out
1 holiday at retreat without wifi
1 experience at a top hotel
1 Disney on Ice event
and we are plotting Xmas Dinner in our campervan without our kids.
Prior to 2018 we did none of this. And Liz has her annual tests just after this run of events, we will book more post tests. We just hate that window, as we worry about the results.
Am I scared, you bet - I journal everyday, and have found a love of the Daily Stoic - which has helped me find focus in the moment.
Keep safe, and make every single minute count.
What a terrible video. You start by answering the question of life expectancy by giving a clear answer and then back track by saying it depends on many different factors. Why not just say the latter part and give people some work to do to help themselves. Jeez!
Hey people. Sorry that you're going through this. I stumbled upon this disease while researching fibrosis. Definitely try intermittent or prolonged fasting as I'm seeing huge benefits from it with another fibrotic condition called Peyronie's disease. Fasting reduces inflammation, triggers autophagy (cellular cleanup) and puts the body in an accelerated healing state. It may initially seem like it's getting worse but it's actually a healing response. I would definitely give it some time and try. I wish everyone the best.
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 BELEIVE THE HYPE! WE will NOT surrender to this disease!
Listen to what your body is telling you! My grandpa has IPF and he was taking ofev. The medicine nearly killed him. The side effects were so bad but we thought that it was the disease progressing. Once he got off the ofev, he was 100x better.
My husband took Ofev for about a year. That medicine almost killed him. They put him on Esbriet but when the Foundation had no more funds for Pulmonary Fibrosis patients he got some meds from the Pulmonologist. But now he’s on nothing for PF. His deep lung pockets have hardened and he’s on oxygen full time. We’ve been going thru this for twenty+ years. It started with Sjogren’s Syndrome when he was 52 and now he’s 78 years young. God bless all of you.
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I lost my 59 year old father to this. Yes, 59. He was diagnosed with COPD around 2015 and died in 2021 with a final diagnosis of Pulmonary Fibrosis and end stage COPD. His condition progressed quite rapidly in the last year of his life. I believe his ability to keep moving forward was what kept him going, until Covid hit and he was more stationary at home.
Can you help me? Where can i find a clinic or center or support group,? Thank you
Hello Anamaria, Hope you are fine, the Best option is the Herbal treatment, Planet Ayurveda is the best place to get a successful herbal cure, you can check their patients' reviews who were treated successfully by them
There is a great group on face book is all we found.
OPEN DOORS, Sponsored by Boehringer Ingelheim makers of OFEV
Where do you find these places thank you
I was diagnosed last month, I have lupus and Scleroderma since 2016, and they say it destroyed my lung causing the scaring so now I have IPF and I find it difficult to believe my life has. been cut short. I want to treasure moments and create moments with my family.
REMEMBER Too many ads on TV.
Please don’t start a video with ‘Life expectancy is not so good’. Let’s start with glass half full and go from there.
My dad passed away from IPF almost 1 month ago. He had been diagnosed 6 or 7 years ago.
The progression was instantaneous. He was perfectly fine one day. He went to work, after work he went to a party with some friends, had dinner with them, then came home and everything was normal. Later that evening, he started having trouble breathing and we called an ambulance. He died a week later in the ICU because it got worse every single day. At first they thought it was just a bad case of pneumonia because his lungs couldn't fight the infection due to his condition, but once he got transferred to the ICU, they told us that it was his Pulmonary Fibrosis worsening and there was nothing else they could do for him.
For anyone who has lost someone to this horrible disease, I share your pain. Just know that you are not alone.
Life is never going to be the same without my dad.
I lost my husband due to PF, he was diagnosed 6 years back, from then he was struggling with that disease and at last we lost him on dec31 2023.I know that pain and struggles he went through
My dad passed away on Friday 2 9 24. He was diagnosed with it in December of 23 right after Christmas. Went into the icu after 3 weeks of home oxygen. Died on ecmo and a ventilator at the university of Minnesota medical center. Charish each day
where are ypu located
Your explanations are not too clear ?
I was diagnosed with ipf on March 7th of this year. I researched treatment options and set up to get umbilical cord stem cell transplants over a 3-week period in Bangkok. I have completed the treatment and I no longer have symptoms of the disease. My oxygen has returned to 99%. I can walk again, sing again, play trumpet again add exercise again. The scarring has been reversed in my lungs and the tissue has been regenerated
Can you.share the details of the hospital and treatment cost.
Is this post bogus? If it is its disgusting, if something sounds to good to be true, it usually is. Fingers crossed this is a genuine post.
Then don't throw out numbers!
Why are you yelling? We rehabilitate people all the time and Dr. Shah is giving his impute as he handles patients with all sorts of lung disease. I understand that this disease is frustrating but you cant yell about it. He has helped so many people please show a little respect please.
How is it diagnosed?
It took 6 months to Eliminate other possibilities. He was so breathless thought it was Covid . 1 year later quite a decline but still eating well just not very mobile
@@StevenCasperI have question deos pulmonary fibrosis affect and damage both lungs
A cat scan and a pulmonologist can probably tell from an xray. But for sure cat scan. It's a hardening of the lung tissue.
@@Jess-wk5jo on my husband it did. I’m
Assuming a double lung transplant is the only way to cure it. Very few pass all the test to even get in the list
Ofev at 12000 a month.doesnt work for me
Stop putting text all over the screen. Use CC.▼
he is very negative person
Why did you not mention lung transplant?