Living with IPF - what is it really like?

Diagnosed with IPF 7+ yrs ago. Lung function was down to around 35%. Was fortune enough to get on the transplant list. Within 3weeks I got the call. Had my surgery 9/30/22 and so far so good. Was in the hospital 4 weeks 2 of which I don't remember. I lost 20+ lbs and most of my muscle. 2 weeks of PT and nurses care i was able to come home. Im 71 so im really grateful that I was able to get it done. While replacing the left lung they also did a LAD bypass. This was all done at Temple University Hospital in Philadelphia Great team

Praying for those wirh this ...there is HOPE ..with JESUS

My father was diagnosed and fought hard for 3 years. He tried many different things! Did everything the doctors said! He died one week shy of 3 years! And when I see people say try this try that! I saw him do them and continue to decline! Listen to your doctor! Get a support group!

I can relate to these folks When I was diagnosed my world fell apart very depressed for a while.doing much better now mentally from my family Im not afraid to die Im just not ready at 72 I have more life to live.

My dad just got diagnosed today. He only has cough for now. He is 82. I tried to be super positive about it to reassure him and he is ok , but I am freaking out right now. He doesn't deserve this. Jesus please heal him.

My brother was diagnosed w IPF 2007 @ 74 yrs old. He passed away 11 months later in October 2008. In November 2008 I was diagnosed with it & also had an autoimmune disease called Sweets Syndrome. I’ve been on oxygen since Sept 2015 & am now at home much more. I’m looking for a good support group, the one I was going to, just had speakers, so I quit going about 2 yrs ago. I stay active, good Drs that listen to me. I turned 83 last October. God bless, Ann

only the people with it will understand ..

my mum was diagnosed with this terrible disease - she lasted 3 weeks and sadly died, it is one of the worst diseases with barely any treatment .We need more research into IPF

Yes the life expectancy stat of 3 to 5 years is correct. BUT the median life expectancy is 5 years meaning that 50% of warriors live beyond the 5 year milestone from diagnosis and many well beyond. Keep positive.

My mom now suffering from IPF , big headed damaged the world with corona , I am really can not sleep thinking about her struggle 😭😭😭😭😭, the progression for IPF may be so fast , it depend for the person and his power to fight. May Allah support me

How is everyone? I’d love to hear your stories and how long ago your diagnosis was. I’ll be honest- I’m scared. It’s hard not to be. I’m in the early stages of this new chapter of life. Determined to stay positive but feel very alone at this time.

My mother passed away in May 2019, and lived exactly 5 yrs after her ipf diagnosis. She was 72, and did not require oxygen therapy, only when she had pneumonia and flare ups.

I've been diagnosed as having this horrible lung disease but also have Bronchiectasis among other multiple chronic health conditions. I am turning 50 this August, never smoked in my life so I am really confused how I have this. Been an asthmatic all my life. I have good and not so great days having low moods I guess as a sinking feeling as most days I have no voice to speak about how I feel being deprived of oxygen means I suffer from having Hemiplegic migraine attacks. Also diagnosed with a couple of autoimmune diseases and one Autosomal disease. I am waiting to see a pulmonary Specialist to help me manage this array of conditions. My quality of life is slowly slipping away but I am going to try to beat this for me and my family.

I am envious of patients at Papworth as they have a support group. My husband got the diagnosis and I asked about support and they said there wasn't any in Milton Keynes. No support group,no counselling,nothing that I read there would be. We are considering moving back up north as they seem to have support groups there. My husband is being really positive,he doesn't dwell on it,I'm falling apart,I wake every morning and as soon as I remember the terror comes back.

Is all bad lung scaring ipf , I was told 4 nearly five years ago , I had bad scaring on one of my lungs , after just surviving pneumonia nearly died a few times collapsed in ane throwing blood up, but I had sepsis too and they wanted to remove the lung but medication started to work just after I’d signed to remove it. I was told I’ll be fine unless I get pneumonia again because it will be fatal. I was told to go to scans every six months but never happened.I seem healthy, it hurts in the cold but that’s it.

hello sir.. your video is really nice... my close relative was suffering from this condition.. he use to suffer

GOD PLEASE HEAL L& GIVE COMFORT..LOVE & light

Very nice to hear from you all. I have had this for at least 5 years. It appeared on my chest X ray and a ct scan He thought it was C0PD. It was finally picked up in October I am on 0FEV don’t know what will happen from here. Not on oxygen but oxygen level is between 93 and 99%. Scary. You don’t know how far ahead to plan.

Thank you, you are awesome, please take the time to listen to curry Blake with JGLM ministries. Thank you.

I just got diagnosed after having Covid-19 in August of 2020. I am 35, and also have an autoimmune disease. It is pretty scary, I am needing to rethink a lot of things about my life. I am hopeful that I can find a good treatment center and a support group.