Living with IPF - what is it really like? 

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

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

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!

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

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 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

only the people with it will understand ..

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

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.

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.

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

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 was diagnosed with IPF in 2007. I was desperate and eventually phoned Professor Peter Molan at Waikato University in New Zealand, who is a world authority in Manuka honey. I thought that as this honey can repair external wounds, it would help internally. He sent me some high quality Manuka honey and directed me to use it through a nebulizer. Within 2 months my coughing had reduced by 98% and within 6 months the disease was no longer progressing. I still suffer from IPF, but 15 years later, I am still here and my fibrosis is not progressing.

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.

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.

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.

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.

My husband died at the age of 57. He was admitted into hospital 21st July 2016, diagnosed 10 days later and on 8th August 2016 he was gone.

My grandpa passed away one month ago today on April 1, 2021. He lived for 10 years with IPF. He required oxygen for the last 2 years.

The main thing about this disease is to never give up hope. Yes they say it terminal between 3 & 5 years from diagnoses to grave or transplant. Im 6 years since being diagnosed. They have to tell you the worst possible scenario so one understands how bad this disease really is. Everyone's out come is different and also the length of quality life after diagnosed to transplant. Keys to living longer are. 1. Keep a positive as possible mind set. 2. Keep yourself in as good physical condition as possible. The better shape one can stay in the better off transplant surgery will go. 3. Do what your Doctors say 100% 4. Enjoy life the best you can. Enjoy Family and Friends. 5. Don't feel sorry for yourself. Don't dwell on the negative. I know all this is easier said then done and I couldn't agree more because Iv been going through it for the past 6+ years. The better state of mind and health will make a way better out come. Good Luck to you all

The worst thing to fear is a life not lived to the absolute fullest you can manage to live.

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

How do you bring someone back once they are in hospital ? Any ideas or experiences ? Someone I know is suffering and given up on life

Hello im jason from new zealand, i have pku, but doing fine, im now, 58, im on my dief, i dont eat out i do my own cooking at home mostly vegetables potatoes and some fruit

I might tell my grandfather about the support groups.

Just happened to my fit and healthy husband and we are devastated.

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

Am so afraid of this IPF diagnoses, they want me to try OFEV, tablets twice a day,has anyone else been on thes meds?

I would like to fine a group for support but in Brisbane there just is not one, do I am trying to live with the depression that comes with this awful disease. We need to get more research & find a cure, not for me but future generations.

I have been prescribed Prednisone it has really helped me have a better quality of life. Its not a cure but it does help me cope. Ask your Doctor see what he says. Just trying to help Y'all we are all in this together. Try and keep a positive mental attitude and don't let this IPF over power you. Keep strong.

My mother diagnosed with Pulmonary fibrosis 2months back. I’m literally scared. I hope she gets better. She is only 47 years old.

I was diagnosed a few weeks ago, but I knew something was going on dint know for sure because I'm asmathic ,but still knew something was different , I am depressed 😔 cause I have other health issues. I'm trying to keep my self busy and not to worry what ever is coming I'm ready

I am in the hospital about every other month at least...medication works for a month or two. Some days I don't even have the oxygen to walk to the kitchen. So there is no cure?

3 to 5 yrs and you don’t know how long you had it. My husband just diagnosed after 6 months of testing now waiting 2 months to see pulmonary dr :( dr have no answers per individual

I am waiting to hear . they said it was not cancer why o why are all the comments turned off on all the sights on you tube . none of us will say bad things we all want answers that's all . I'm hoping it is something else . Does it come and go or just get worst so many questions and no answers . The worry is the hardest thing have I got it or not. the weird thing is if I do a load of hard work I feel great perhaps it's lack of exercise .

Thank you for this. I am mourning the death of my darling Dad who died last Friday. He was diagnosed late January 2017 with IPF. Dad was 83 but we think he has lived with IPF for many, many years. In the mid 1980’s Dad would come home from golf and say how exhaausted he was. Dad had been a brilliant golfer all his life and was only in his very early 50’s back then. When I am able I am going to get involved in the Australian Lung Disease Foundation. I want to help educate people about IPF.

and those close to them, too...

I have it because I had beat the flu in 2018. am only 44 years old. Can you please help me?

Help me my husband just got diagnosed with pulmary fibrosis.also rhumitord arthrists.& has short barrettes. Cant stop coughing ..any suggestion on cough syrup? Nothing works...devistaed only 60

I am just 24 😑😑😑 and i have ild drugs inducing of mesalazine 😑😑 my both lung was fibrosis all 😑😑

❤

🥺🥺 My mom was diagnosed 3 months ago she is really depressed 😔😔😔

I’m scared now ! I just suddenly started getting heart palpitations and it’s scaring the shit out me and my chest feels heavy all a sudden and it started just yesterday and it’s continuous..... hasn’t stopped it’s 4:00 am and I went to the bathroom and reached for toilet paper and my heart started pounding and my chest feels kinda tight and heavy

I have it and honestly Im not staying positive

where are the pts who are using oxygen??

I am 32 I have copd ifp I can say it's scary I will not get see 40

anyone like me that have illness in late twentys!

nc