Was diagnosed with IPF a year and half ago. I am on oxygen 24/7 I pray God every day that after everything l have been through over my younger years with Heart problems, Breast cancer, stroke, that l can still fight and get through this. I am alone with no family support and l tell God l can do this with HIM. He is where l get my strength. I have many family members but all work and busy, which l understand. I cry, and just breathe. I never dreamed that I would end up like this... Prayers for all who have been diagnosed with this illness. ❤🙏🙏❤️🩹
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
You are lucky. It won't happen for me. I also have cardiovascular disease. Now, P.Fibrosis also. I doubt a qualify for a lung transplant with that and 68 years of age.
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!
Listening to the doctors, regarding about IPF, is the worse thing u can do. Going to the hospital, for this disease, is the wrong thing to do. Doing your own research on the internet and coming across an all natural Institute, that treats lung diseases, with their all natural products, is the right thing to do.
I'm at 9yrs and am just now on full time oxygen. Transplant picture is looking pretty bright for me as I'm cleared to get on listing now. Get involved and talk about your thoughts and fears, talk to support groups. Do not give up! Every day you spend frozen in fear is like a day you chose not to live, a day sacrificed. 🙏🙂
We have gone from walking and happy man to ICU in 4months , how are all these people so normal . Please tell , we have had the same standard medication.
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
Hi Ann, go online, check what u can do/ eat to increase oxygen intake in yr blood. If tis can be done naturally, from inside our own bodies, it could make a difference. Whatever it is, u won't see the results overnite, so be patient & determined, believe in what ure doing. The mindset is 50% of the effort.
@@Golfr2020 I'm guessing more slow moving and more stable...I think some people have fast progression and some don't depends on what causes it and with IPF they don't know so it could just be how it happened the cause.
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.
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.
if you are not the girl to die of bpoc, pulmonary emphysema and pleural fibrosis plus ankylosing spondylitis at the age of 72, how should I feel with 2 small children who can't see their big ones?
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.
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.
i was diagnose in 2005 and still going with out the use of anymedication,,,,, but i can seeit and feel it getting worse,,,,specially when i wake up in the middle of the night gaspin for air
@Jolie France Thanx,,, yes i'm still here thanks god for that,, no treatment has worked for me ,,,they gave me prednisone for 6 months but it did not help ,,i am using 2 kinds of inhalators right now but i have not seeing any improvement ,,,, and yes my disease is getting worse ,,,i used to walk around the park close to my home in 40 minutes and now is taking me an hour because i get tired sooner and have to stop more often to catch my breath GOD BLESS YOU AND YOUR FAMILY!!
@Jolie France I was a marathon runner and a long distance ciclist & used to do between 75 -100 miles rides till last year,,,,, my doctor told me that has helped a lot ,,, im still doing as much exercise as my body alllows me & also tried to have a positive mind,,,, (but sometimes is not possible)
@Jolie France Yes but if she is healthy may be a Doble lung transplant?? My doctor told me it's to early for me to talk about lung transplant,, don't know what else to tell you😪😪
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
Hello, please tell me how it was detected and how it is passed that the diagnosis results in conclusions? I have bpoc, SD, 3,4 with emphysema and fibrosis in both lungs, good health to your family
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
I'm sorry for your loss. My dad was diagnosed on Dec13, 2018 and passed on May 2, 2019.. This is a terrible disease. My father suffered from depression after he was diagnosed & he went down hill very fast. He struggled to breath & it was hard to see him suffer as he did..
@@georginasmith441hi my mom also died in hospital, i don't know how she got infected in hospital,do you think due to management in hospital cause infection?
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.
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.
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.
Marsha Pontius ,I went to see a pulmonary Dr. And she gave me the good news. No fibrosis my lungs are somehow damage for so many years with asthma God is good I believe this is a Maracle, please don't be afraid and get closer to your creator and leave it in his hands God Bless you
sorry for your loss, it never fails to amaze me that there is still no concrete treatment.....I feel that not a lot of money goes into research....sending you warm wishes. ....my mum died of this terrible disease in 2015 :(
@@georginasmith441 Sorry for your loss Georgina, and thank you. If there is a saving grace, tgat would be that my husband did not suffer and for him that it was quick. As a child he had asthma, and he would relay to me how bad it was and at times he would pray for death. Warm hugs to you xx
@@hisword1296 Thank you. It will be 3 yrs this year since he depated. Thankfully I have an optimistic, positive nature. Everything happens for a reason.
Sorry for your loss. I know how it feels. I was diagnosed IDPF since August of 2018 and used oxygen for 2-1/2 yrs. I keep on telling my doctor my oxygen Is good but I realize now I need one even my pulse oximeter is 97% still shortness of breath. It's been rough for me again with all this kind of test lab CT scan breathing test walking test etc. more.. I'm surprise that I still have blood in my body. I am a breast cancer survivor and have a rough and tough experience with it with chemo radiation, now I have to go through again different kind of physical exam lab bruises. I just keep on praying to our Lord to give me more and more strength to fight for all this disease.
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.
Hi Lynda, we're so sorry to hear you're going through such a difficult time. Please contact our support team who will have lots of information and provide a listening ear: www.actionpf.org/information-and-support/support-line
So sorry to hear about your situation. I wasn’t offered any support, no suggestions of support groups. Kind of just got through it myself with family. Since my husband passed, it appears that IPF is becoming more known, there needs to be a campaign about it, as there is no cure for it.
So sorry to hear your husband has this horrible disease, my husband also just got diagnosed, I feel like crying, screaming…I’m also terrified for him, for me. So scared of the future and what he’s going to have to go through. How is your husband doing now?
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.
Dear Madam! Can you tell the CT tomograph or x-ray findings how to characterize the diagnosis? Thank you I have bpoc pulmonary emphysema and pleural fibrosis
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 want to appreciate dr.owobu for giving me back my life again, i was diagnose of herpes virus after the use of dr. owobu herbal medicine i got cured, all thanks to dr.owobu I will forever be grateful to dr.owobu if you are passing through similar case like.(IPF).(HPV). (gastritis).(hepatitis) etc via his email drowobuherbalhome1166@gmail.com or reach him on is whatsaap number +2348114477270.god bles you all
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.
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.
i want to appreciate dr.owobu for giving me back my life again, i was diagnose of herpes virus after the use of dr. owobu herbal medicine i got cured, all thanks to dr.owobu I will forever be grateful to dr.owobu if you are passing through similar case like.(IPF).(HPV). (gastritis).(hepatitis) etc via his email drowobuherbalhome1166@gmail.com or reach him on is whatsaap number +2348114477270.god bles you all
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.
Hello Margaret - I am 77 and have just been diagnosed and am completely shocked and scared. I live in Tenterfield NSW 4 hours from Brisbane and often visit. Once I get to see the specialist in Toowoomba and find out the finer details would it alright to correspond with you. Will understand if you do not wish to. Jan
@ hi Jan, so sorry to hear that you have got IPF. Yes would love to hear from you... Sometime people with the same condition understand the emotional ride so much more than anyone else. L . Cheers Margaret 😀🌷
Hi Lynda, we're so sorry you and your husband are going through this difficult time. You're not alone - we've got lots of information and support services here: www.actionpf.org/information-and-support/newly-diagnosed
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 .
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?
@Hollie Mitchel How are you doing? I have being carring this disease for over 5 years and it just gets worse no medications seem to work or give me any comfort.😔😔
@@elcompamartinez2647 I write from Romania, please tell me how the conclusions of this cruel disease are highlighted on CT tomograph that I am also cruel to the disease
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
@@KpapsTV CT scan but luckily I saw a pulmonary Dr. And she said it is not fibrosis it's related to my asthma Wich I have for 66 years thank God I have hope and ty for your coment
@@angelachanning2027 good morning. No fibrosis my lungs are only damage in result of so many years with asthma ,i believe this is a miracle after 3 x rays and one c scan. Good is good🙏 leave everything in his hands God Bless
Hi Karishma, thank you for your comment. We're so sorry to hear of your mother's diagnosis, we have lots of UK based support available here: www.actionpf.org/information-and-support/living-with-pulmonary-fibrosis
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
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
@@diegolol8523 my husband on palliative care.we have learned to live with it. He has oxygen 24/7 runs out of air fast. He can get around the house and short distances. His disease right now is moving slow.
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 dad was put on Prednisone when he was dying from IPF. He became so short tempered and foully vicious. I’ve made it clear to my family and Doctor that if I ever become sick that way and Steroids are offered for “better quality” or “more time” to expect me to decline it. I won’t put my family though that.
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
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
Try boiling shredded fresh ginger+ 5 crushed cardamom pods + 2 black pepper+ half a cinnamon + 2 clove . You can change the portions according to taste. Drink as much as he can. Get him to gargle regularly with salted water to clear the mucous. Search the net for yogic breathing. No milk no dairy products. Eat healthy ..exercise..walk...accept
@@trishasharnowske1031 My father had IPF and cough syrup will make more mucus in his lungs. We did not give him cough syrup doctor and pharmacist said. If you have any questions or concerns please reply back.
I have to use albuterol to calm my coughing episodes. Getting a device called a spacer from my pharmacist seems to help the meds get into my lungs better. I do not think cough suppressants are a good idea, our lungs need to cough to clean themselves since pneumonia is common. Tylenol helps with the aches from coughing so much also. Just diagnosed so still working things out myself. If he had barrette's esophagus (assuming that's what you mean) he may be breathing in stomach contents into his lungs. I have GERD, and I'm doing this, so it is also important to seek help from a gastroenterologist who can get the reflux better controlled.
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.
Good on you! I live in Adelaide. Got P.Fibrosis. I am devastated! It is mild but it scares the crap out of me at 68 years! Support groups are important. I applaud you.
I’m on oxygen a few months now. My mom passed from IPF at 80. I was originally diagnosed with IPF at 68. Few months later re-diagnosed with systemic scleroderma with ILD. I’m now 75. I have a productive cough most of the day. Strange coincidence.
Was diagnosed with IPF a year and half ago. I am on oxygen 24/7 I pray God every day that after everything l have been through over my younger years with Heart problems, Breast cancer, stroke, that l can still fight and get through this. I am alone with no family support and l tell God l can do this with HIM. He is where l get my strength. I have many family members but all work and busy, which l understand. I cry, and just breathe. I never dreamed that I would end up like this... Prayers for all who have been diagnosed with this illness. ❤🙏🙏❤️🩹
Was diagnosed with IPF a year and half ago. I am on oxygen 24/7
I pray God every day that after everything l have been through over my younger years with Heart problems, Breast cancer, stroke, that l can still fight and get through this. I am alone with no family support and l tell God l can do this with HIM. He is where l get my strength. I have many family members but all work and busy, which l understand. I cry, and just breathe. I never dreamed that I would end up like this... Prayers for all who have been diagnosed with this illness. ❤🙏🙏❤️🩹
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
You are lucky. It won't happen for me. I also have cardiovascular disease. Now, P.Fibrosis also. I doubt a qualify for a lung transplant with that and 68 years of age.
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!
Listening to the doctors, regarding about IPF, is the worse thing u can do. Going to the hospital, for this disease, is the wrong thing to do. Doing your own research on the internet and coming across an all natural Institute, that treats lung diseases, with their all natural products, is the right thing to do.
@@DavidF971 Could you elaborate-?
@same like my father he is also tried everything for his cough problem but there is no response ..could u plz help me
I'm at 9yrs and am just now on full time oxygen. Transplant picture is looking pretty bright for me as I'm cleared to get on listing now. Get involved and talk about your thoughts and fears, talk to support groups. Do not give up! Every day you spend frozen in fear is like a day you chose not to live, a day sacrificed. 🙏🙂
We have gone from walking and happy man to ICU in 4months , how are all these people so normal . Please tell , we have had the same standard medication.
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
May God send you people who'll support you in your journey and more blessings for you to cherish! Will include you in my prayers, Ann.
Hi Ann, we have support groups that could be helpful to you if you're based in the UK: www.actionpf.org/information-and-support/find-a-support-group
Hi Ann, go online, check what u can do/ eat to increase oxygen intake in yr blood. If tis can be done naturally, from inside our own bodies, it could make a difference. Whatever it is, u won't see the results overnite, so be patient & determined, believe in what ure doing. The mindset is 50% of the effort.
You are lucky. You done well. How did you do that, I wonder?
@@Golfr2020 I'm guessing more slow moving and more stable...I think some people have fast progression and some don't depends on what causes it and with IPF they don't know so it could just be how it happened the cause.
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.
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.
Have you considered lung transplant??
Were you able to bounce back ? If yes , please share how . Someone I know is suffering
Hello. May I know how are you fighting you disease please?
How Long You dave the sickness How many years?
if you are not the girl to die of bpoc, pulmonary emphysema and pleural fibrosis plus ankylosing spondylitis at the age of 72, how should I feel with 2 small children who can't see their big ones?
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.
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.
i was diagnose in 2005 and still going with out the use of anymedication,,,,, but i can seeit and feel it getting worse,,,,specially when i wake up in the middle of the night gaspin for air
@Jolie France Thanx,,, yes i'm still here thanks god for that,, no treatment has worked for me ,,,they gave me prednisone for 6 months but it did not help ,,i am using 2 kinds of inhalators right now but i have not seeing any improvement ,,,, and yes my disease is getting worse ,,,i used to walk around the park close to my home in 40 minutes and now is taking me an hour because i get tired sooner and have to stop more often to catch my breath
GOD BLESS YOU AND YOUR FAMILY!!
@Jolie France HI!! i will be 71 this SEPTEMBER 11,,, have a great day!! 🙏🙏
@Jolie France I was a marathon runner and a long distance ciclist & used to do between 75 -100 miles rides till last year,,,,, my doctor told me that has helped a lot ,,, im still doing as much exercise as my body alllows me & also tried to have a positive mind,,,, (but sometimes is not possible)
@Jolie France Yes but if she is healthy may be a Doble lung transplant?? My doctor told me it's to early for me to talk about lung transplant,, don't know what else to tell you😪😪
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
Hello, please tell me how it was detected and how it is passed that the diagnosis results in conclusions? I have bpoc, SD, 3,4 with emphysema and fibrosis in both lungs, good health to your family
Inshallah Allah will give her STRENGTH!!!❤
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
I am sorry for your loss. Was she diagnosed too late? or did her condition progress rapidly ?
hi Safa - a bit of both really, her heart contributed and the she got an infection in hospital which sped everything up.....
I'm sorry for your loss. My dad was diagnosed on Dec13, 2018 and passed on May 2, 2019.. This is a terrible disease. My father suffered from depression after he was diagnosed & he went down hill very fast. He struggled to breath & it was hard to see him suffer as he did..
@@georginasmith441hi my mom also died in hospital, i don't know how she got infected in hospital,do you think due to management in hospital cause infection?
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.
my mother has it she never smoked a day in her life either life is truly unfair
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.
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.
Marsha Pontius ,I went to see a pulmonary Dr. And she gave me the good news. No fibrosis my lungs are somehow damage for so many years with asthma God is good I believe this is a Maracle, please don't be afraid and get closer to your creator and leave it in his hands God Bless you
My husband ha just been diagnosed too,it's so frightening. Where do you live?
Hi
Marsha. Into would love to here outcomes my husband has good days bad days. So hard not knowing day to day
Idiopathic Pulmonary Fibrosis
th-cam.com/video/bUvSC2jkb7U/w-d-xo.html
I know what you mean by scared . I have some symptoms but I just don't know got to have the lung function test next .
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.
sorry for your loss, it never fails to amaze me that there is still no concrete treatment.....I feel that not a lot of money goes into research....sending you warm wishes. ....my mum died of this terrible disease in 2015 :(
@@georginasmith441 Sorry for your loss Georgina, and thank you. If there is a saving grace, tgat would be that my husband did not suffer and for him that it was quick. As a child he had asthma, and he would relay to me how bad it was and at times he would pray for death. Warm hugs to you xx
@@safariqueen4811 So sorry for your loss - I feel your pain-!!
@@hisword1296 Thank you. It will be 3 yrs this year since he depated. Thankfully I have an optimistic, positive nature. Everything happens for a reason.
Sorry for your loss. I know how it feels. I was diagnosed IDPF since August of 2018 and used oxygen for 2-1/2 yrs. I keep on telling my doctor my oxygen Is good but I realize now I need one even my pulse oximeter is 97% still shortness of breath. It's been rough for me again with all this kind of test lab CT scan breathing test walking test etc. more.. I'm surprise that I still have blood in my body. I am a breast cancer survivor and have a rough and tough experience with it with chemo radiation, now I have to go through again different kind of physical exam lab bruises. I just keep on praying to our Lord to give me more and more strength to fight for all this disease.
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.
Hi Lynda, we're so sorry to hear you're going through such a difficult time. Please contact our support team who will have lots of information and provide a listening ear: www.actionpf.org/information-and-support/support-line
So sorry to hear about your situation. I wasn’t offered any support, no suggestions of support groups. Kind of just got through it myself with family. Since my husband passed, it appears that IPF is becoming more known, there needs to be a campaign about it, as there is no cure for it.
So sorry to hear your husband has this horrible disease, my husband also just got diagnosed, I feel like crying, screaming…I’m also terrified for him, for me. So scared of the future and what he’s going to have to go through. How is your husband doing now?
Thank you, you are awesome, please take the time to listen to curry Blake with JGLM ministries. Thank you.
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.
Hello. May I know what are the findings in your xray please?
Dear Madam! Can you tell the CT tomograph or x-ray findings how to characterize the diagnosis? Thank you I have bpoc pulmonary emphysema and pleural fibrosis
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
only the people with it will understand ..
The people diagnosed with this disease don't understand anything but how it feels to have & live with it.
i want to appreciate dr.owobu for giving me back my life again, i was diagnose of herpes virus after the use of dr. owobu herbal medicine i got cured, all thanks to dr.owobu I will forever be grateful to dr.owobu if you are passing through similar case like.(IPF).(HPV). (gastritis).(hepatitis) etc via his email drowobuherbalhome1166@gmail.com or reach him on is whatsaap number +2348114477270.god bles you all
@Johnson hen are you joking
Hopefully not to many needing to be in it to understand.
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.
You will survive Longer God is Good!
I just got diagnosed after COVID-19 as well. I'm 47.
I am having symptoms after Covid. Would you mind if I could ask you some questions. I am 31 years old.
Just realised we are both Jessica H too. Weird.
I’m 32 I feel
Like I have it but my doctors running other tests. Please tell me what your symptoms were.
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.
eat shit baa with your honey stop advertising to that Dr and your honey bulangiule
Are you serious ?
Do you dilute the honey with water to nebulize it?
Bull shit.
Yes. How does one do that. zi mean use it through a nebuliser?
GOD PLEASE HEAL L& GIVE COMFORT..LOVE & light
i want to appreciate dr.owobu for giving me back my life again, i was diagnose of herpes virus after the use of dr. owobu herbal medicine i got cured, all thanks to dr.owobu I will forever be grateful to dr.owobu if you are passing through similar case like.(IPF).(HPV). (gastritis).(hepatitis) etc via his email drowobuherbalhome1166@gmail.com or reach him on is whatsaap number +2348114477270.god bles you all
Amen
Бог не имеет силы на земле, да, он исцеляет эти жестокие и худшие болезни, чем рак.
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.
What is the medication. Is breathing enough
thank GOD for the Life extension.
I am sorry to read this. Though I am glad he had more time than some. I am hopeful that I may have 5 plus years yet.
@@Golfr2020how are you now?
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.
Hello Margaret - I am 77 and have just been diagnosed and am completely shocked and scared. I live in Tenterfield NSW 4 hours from Brisbane and often visit. Once I get to see the specialist in Toowoomba and find out the finer details would it alright to correspond with you. Will understand if you do not wish to. Jan
@ hi Jan, so sorry to hear that you have got IPF. Yes would love to hear from you... Sometime people with the same condition understand the emotional ride so much more than anyone else. L . Cheers Margaret 😀🌷
Just happened to my fit and healthy husband and we are devastated.
Hi Lynda, we're so sorry you and your husband are going through this difficult time. You're not alone - we've got lots of information and support services here: www.actionpf.org/information-and-support/newly-diagnosed
Idiopathic Pulmonary Fibrosis
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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 .
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?
@Hollie Mitchel How are you doing? I have being carring this disease for over 5 years and it just gets worse no medications seem to work or give me any comfort.😔😔
@@elcompamartinez2647 I write from Romania, please tell me how the conclusions of this cruel disease are highlighted on CT tomograph that I am also cruel to the disease
Use oxigen consecrated 24 hours or youer docter say oxigen is impotent
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
what exam did You Do is That Xray or cT scan?
@@KpapsTV CT scan but luckily I saw a pulmonary Dr. And she said it is not fibrosis it's related to my asthma Wich I have for 66 years thank God I have hope and ty for your coment
You're doing better than I am. I'm newly diagnosed as well. 2 months ago I was diagnosed after COVID-19. Last year.
@@angelachanning2027 good morning. No fibrosis my lungs are only damage in result of so many years with asthma ,i believe this is a miracle after 3 x rays and one c scan. Good is good🙏 leave everything in his hands God Bless
@@guillesanmartin2537 my apologies but great news it's not pulmonary fibrosis. But still sorry for the damage.
My mother diagnosed with Pulmonary fibrosis 2months back. I’m literally scared. I hope she gets better. She is only 47 years old.
Hi Karishma, thank you for your comment. We're so sorry to hear of your mother's diagnosis, we have lots of UK based support available here: www.actionpf.org/information-and-support/living-with-pulmonary-fibrosis
tell me, please, with which analysis was it diagnosed? and how is the result of the X-ray given CT tomograph passed?
She could get transplant stay hopeful
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
This disease killed someone I loved its very Progressive
The worst thing to fear is a life not lived to the absolute fullest you can manage to live.
Idiopathic Pulmonary Fibrosis
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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
how is your husband?
@@diegolol8523 my husband on palliative care.we have learned to live with it. He has oxygen 24/7 runs out of air fast. He can get around the house and short distances. His disease right now is moving slow.
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.
Do you take pirfenidone?
My dad was put on Prednisone when he was dying from IPF. He became so short tempered and foully vicious. I’ve made it clear to my family and Doctor that if I ever become sick that way and Steroids are offered for “better quality” or “more time” to expect me to decline it. I won’t put my family though that.
I have it because I had beat the flu in 2018. am only 44 years old. Can you please help me?
I'm on a support group on FB
Support group on FB helps a lot
@@rochellefreeman1516I will look for you hun. Thank you!😊👍
@@rochellefreeman1516I just got out of the hospital again, but the one thing that I refuse to lose is my mobility.
Pulminary fibrosis support group by breathe support
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 was just recently diagnosed at age 45. Have you tested Ofev? Has it helped? How are you doing now?
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
That sounds like a panic attach..I have them..but get check anyway...God bless
Yep those symptoms are familiar.
and those close to them, too...
so true....it's a terrible disease.
I am just 24 😑😑😑 and i have ild drugs inducing of mesalazine 😑😑 my both lung was fibrosis all 😑😑
Hopefully you're doing okay! Any idea to what caused it for 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
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
Try boiling shredded fresh ginger+ 5 crushed cardamom pods + 2 black pepper+ half a cinnamon + 2 clove . You can change the portions according to taste. Drink as much as he can. Get him to gargle regularly with salted water to clear the mucous. Search the net for yogic breathing. No milk no dairy products. Eat healthy ..exercise..walk...accept
DO NOT give him cough syrup.
@@trishasharnowske1031 My father had IPF and cough syrup will make more mucus in his lungs. We did not give him cough syrup doctor and pharmacist said. If you have any questions or concerns please reply back.
@@trishasharnowske1031 The cough he has is the lung disease.
I have to use albuterol to calm my coughing episodes. Getting a device called a spacer from my pharmacist seems to help the meds get into my lungs better. I do not think cough suppressants are a good idea, our lungs need to cough to clean themselves since pneumonia is common. Tylenol helps with the aches from coughing so much also. Just diagnosed so still working things out myself. If he had barrette's esophagus (assuming that's what you mean) he may be breathing in stomach contents into his lungs. I have GERD, and I'm doing this, so it is also important to seek help from a gastroenterologist who can get the reflux better controlled.
🥺🥺 My mom was diagnosed 3 months ago she is really depressed 😔😔😔
Hello. How is she now? May I know what are her symptoms please?
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.
Good on you! I live in Adelaide. Got P.Fibrosis. I am devastated! It is mild but it scares the crap out of me at 68 years!
Support groups are important. I applaud you.
@@Golfr2020 I understand your sheer frustration and I hope you will get the support you need throughout your journey. God Bless.
I have it and honestly Im not staying positive
I am 32 I have copd ifp I can say it's scary I will not get see 40
this breaks my heart
Ask God to heal you in the name of Jesus Christ. I am praying for you too!
God will Heal You Amen
@@KEngum1 mai lăsat pe Isus Cristos omule cu nu vindeca pe nimeni
How are you doing now? I'm in my 30's
❤
anyone like me that have illness in late twentys!
How are you doing now? I'm in my 30's
my weight is still low! how are you?!
nc
where are the pts who are using oxygen??
I'm on oxygen. It's terrible.
I’m on oxygen a few months now. My mom passed from IPF at 80. I was originally diagnosed with IPF at 68. Few months later re-diagnosed with systemic scleroderma with ILD. I’m now 75. I have a productive cough most of the day. Strange coincidence.
Was diagnosed with IPF a year and half ago. I am on oxygen 24/7
I pray God every day that after everything l have been through over my younger years with Heart problems, Breast cancer, stroke, that l can still fight and get through this. I am alone with no family support and l tell God l can do this with HIM. He is where l get my strength. I have many family members but all work and busy, which l understand. I cry, and just breathe. I never dreamed that I would end up like this... Prayers for all who have been diagnosed with this illness. ❤🙏🙏❤️🩹