Thank you for presentation. My husband had p for 16 years but it was stable. He had CT scans each year and it was not progressing. During the COVID epidemic he had his first vaccine in spring 2021 and 2nd vaccine in July 2021. Within 5 months he had lost a lot of weight…was struggling to breath was was put in intensive care, he sadly died in Feb 2022. I have read studies that say Cvi vaccines exasperate of problems. I am still devastated by the loss of my husband at only 68 years old. Lorna Ferrari Toronto Canada
My Mom died of PF which was instigated from a bad case of chicken pox, which she was told also landed in her lungs. She was also a smoker (never a good thing). She was diagnosed at about age 33-34 and managed to survive until just past her 50th birthday in 1986. Have really appreciated your videos to help me understand how she suffered & why. It's been healing :)
Thank you so much for explaining this!!! I was recently diagnosed and im now waiting on my test results which is very stressful. I feel much better now after watching your video. Thank you again. Im sure your video has helped a lot of people understand what they may be facing.
I was diagnosed october 2020 and in November diagnosed with emphysema at 62yr I am now 66yr.. I had to leave my job a year later.. I have now been on oxygen since 2022.. now at 5 and just recently put on 24hrs a day.. I constantly get chest infections.. I have great nurses keeping close eye on it.. my daughter is a great help to me and works full time ( she lives near me).. this is a very debilitating condition and very frightening.. I wish all the best to anyone living with this disease.. please pray for a cure..
I'm was recently diagnosed with u.i.p and this was the first video I heard you say anything about it and I'm just having a hard time learning anything about it from my doctor or online.I was really hoping maybe for to your video you could do one about u.i.p because the way you explain things just makes it easier for me to learn.Thanks for your time and I look forward to seeing more videos
My terminal disease diagnosis of IPF two years ago is scary. Dr. Stefan Christian Stanel presents MORE than just the pessimistic news I see on the internet. He provides information that can give hope and some optimism to many of us with IPF. Although there is presently no cure, he stresses the fact that no two cases are necessarily alike. There’s much general information we should know and should discuss with our physician. Thank you, Dr.Stefan, for your approach that we learn more than just the dismal stuff we read on line. Your concern for our being “well informed” and to search out all the facts about our own specific and unique case is commendable. Your genuine interest in keeping us well informed is commendable. Thanks again. 👍
I was diagnosed 9 years ago, though I knew something was wrong 6 months to a year before that. I'd step outside and have to come back inside pretty quickly. I'd tell my wife "Whew! There's not enough oxygen out there." Yes, 3 to 5 years average may be true, but it's not by any means set in stone. My doctor told me that I wouldn't make it to see 60, but here I am. I turned 60 on Christmas day, 2024. At this point, my o2 level can drop into the high 70's from walking less than 50', but it can also stay in the high to mid 80's for the same amount of time/distance. For me, the worst times are getting into and out of bed, or in and out of the shower stepping over the tub. Those can be very scary moments. I don't always use my supplemental O2. Actually, I hardly ever use it, unless I leave the house. Then, I always have it running. During those times, my portable concentrator can't keep up with my needs, but I'm too stubborn to give up and sit down and die. If I could give advice to anyone, I'd say don't stop living your regular life. Don't sit down and rot away. Do as much as you can, within reason. Walk around the house. Step outside and enjoy the view. Listen to your body when it tells you that it needs a break, but don't give up. *Two dr visits ago, my dr walked into the exam room and his first words were "You're still alive?" *My last visit, as he was walking out of the room, I had a fierce coughing fit, which can be normal for IPF patients. He stopped at the door and said "That's what's going to kill you."
I have had asthma for and GERD for decades and now have scarring in my lungs and COPD from the inflammation over a long time period. So as far as I know, my diagnosis is pulmonary fibrosis from reactive airway disease (asthma) and severe GERD. I also have an extremely rare genetic metabolic disease called Variegate Porphyria, that can also have a pulmonary component. I have appointments with specialists soon, so now it's just hurry up and wait (lol). So right now I'm just taking things one day at a time and doing what I can to stay as healthy as I can. I'm 64 and have no family history of PF or asthma but both of my parents and both of my siblings have all had GERD. One brother has it worse than I and now has Barrett's Esophagus (a pre-cancerous condition). Once I see the specialists at my upcoming appointments, I will regroup and make a plan for lifestyle, diet, and medication changes - whatever can have a positive effect on my health.
I'VE been on this earth for 77 years. I was diagnosed with IPF in 2021. I've heard that life expectancy is 3-5 years. Im not afraid of death because I have a savior who promised a resurrection some day. I believe Him. This life on earth society wise has deteriorated through my life time so much that I'm ready to check out. Things are getting so crazy today. Hatred and strife everywhere one turns. Death is just a step to eternal life in Yeshua Messiah. Again, I have no fear of death. It's a natural process. Blessings to all.
This is really informative as I was also diagnosed ILD NSIP familial this July, I had review on 16th Oct and doc checked my condition said it is stable as of now, I keep listening to information shared by Dr Stefan and this really helps to understand what I am going through.
@@nada-io1dd hi I am stable, have issues like my heart rate goes high when I walk or do normal activities oxygen level also goes down , but the moment I sit and relax just for couple of minutes It fix , definitely have a restricted life.
My dad sadly died two weeks ago from ipf he worked in construction and was first diagnosed 2 years ago... I am hoping there will be a cure very soon so nobody has to go through it like my dad.
Hello my name is Sheila and I would to tell you I am deeply sorry for the loss of your dad! My husband has just recently been diagnosed with IPF. And this has been devastating to us as I'm sure you are completely aware, receiving such news. I am looking into everything possible to get more educated especially from others whom have this diagnoses! Maybe if you wouldn't mind, we can become friends for further info. Thank you for your time.
I’m 78 years old and a Vietnam veteran that was exposed to Agent Orange. I was given a chest CT scan for a possible pulmonary embolism, and an incidental finding of lung scarring and nodules showed up. I’m going to check in with my Primary Physician tomorrow for a referral to a specialist. I think the Agent Orange exposure is the culprit, but that’s just my opinion. Thank you for your professional expertise.
I'm 73 and got IPF from a Covid attack. My CT scans are not good and are not getting better over time. Right after I got IPF I also had a heart attack two days later. I had been going to the gym just about every day and my cardiologist told my family after he inserted SIX stents that he had no idea how I was still alive other than I was in excellent shape other than my heart - which he had now fixed, even upgraded. Now my only hope is research scientists coming up with a cure for Pulmonary Fibrosis. Since they fixed sickle cell I suspect a similar fix with CRISPR and nanoparticles might be the research path. I just wish there were a well-maintained database listing all current research and clinical trial future possibilities. I would be a candidate.
If your coughing what I did I bought lung cough tonic n health shop. I also bought mullen it's good for respiratory . I was diagnosed 2017 n I'm doing good than 2018. I'm doing exercise in d morning under d sun 15 minutes. Lung exercise.
My Dad has Severe Progressive Lung Fibrosis caused from when he was in the Military and he worked Around Nuclear Bombs that he had to move on and off his B-52's he was working on. He was an Aviation Mechanic In. The Military. Then when when he got out of the Military he became an Auto Mechanic and he did alot of Aspestos Brake Jobs....For 25 years.
I was diagnosed (by biopsy) in 2014 (sure I had it before then that’s what sent me to Cleveland clinic) it’s 2024 and I’m still here. I’ve cough uncontrollably all along, and have been in 4 clinical trials for it (no help). I just had a bad lung infection (probably from not being good at cleaning my cpap machine). Give lots of steroids (which makes me feel like a million bucks) and am weaned off now. Having difficulty now with catching my breath even with 3-4 liters of oxygen. Despite the pulse ox says I’m at 94-95 (really misleading). Tried quite a few natural things with no avail.
My mom was diagnosed with early stage fibrosis caused from severe GERD.. do you think if she gets the GERD surgery to eliminate the acid that the progression will be slowed down?
My mother has been diagnosed with early onset of IPF with UIP pattern of scarring. She is 55 year old and has diabetes too. She has been suffering for over 5-6 years now but the diagnosis happened only this year. What should I preparing myself for?
@@narayan12376 She is fine. The doctors don't seem too concerned. She does get bouts of severe cough but otherwise she is able to manage basic household chores along with taking care of herself and my father.
My husband was dx with IPF about 3 yrs ago..fast progression. O2 24/7 past year...8 lts now. Recently dx with bladder ca. I question all the vaccines in the past 2 years? Is there a connection?.
My brother has been diagnosed with ILD with Autoimmune Disease in Jan 2024. He is 24 years old. Why medical researchers are not able to find the complete cure or reverse the scarring of lungs tissues yet?
Unfortunetly not. I have IPF and talking with my Doctor the damage is done and cannot be repaired just slowed down. I run 3L and can see the difference when im not on the oxy. and pretty much know that this is my life from now on.
@@Lizbeth36961 From what I have learned it can not be healed or cured. OFEV prolongs the deterioration but not a cure. Unfortunately a lung transplant is the only way now. I quit everything and have gotten a little better from when it started but again it's the meds helping me feel better.
The absolutely longest non-answer I have ever encountered. Wanting to know what is ahead is not “looking in dark places” Pulmonologist will proffer answers without having a clue. I am near the end of my journey with IPF and never received a straight answer.
There are no hard answers. This doctor is clear & accurate. It is a highly subjective disease. Variables are many. I’ve had it 4yrs now. I’m on OFEV. I am on 24/7 supplemental oxygen. Two of my paternal uncles died short of three years. However, they weren’t healthy and strong at diagnosis. I was and still am. Huge unknown as to how long we actually live🤷🏻♀️ Sending well wishes ❤
Sorry but there are no hard and fast answers. Without knowing any of the specifics of a particular case, the information given is about as clear as it could possibly be. As he says, talk to your doctor about your particular case if you want a better estimate. But it still in the end boils down to, "everyone is different". My wife was diagnosed with IPF in March 2022. She had already lost about 30% of her lung capacity. She had pneumonia in 2018 and the x-rays then did not reveal any scarring. So it probably began sometime during those 4 years. She quit smoking before the pneumonia. She had been a light smoker, fewer than 5 cigarettes a day. She got Covid, a mild case, in the fall of 2020. After the diagnosis she was on OFEV for a year but couldn't tolerate the side effects, which were getting more severe over time. She opted not to try to qualify for a lung transplant due to the onerous conditions imposed by the medical establishment. She died in September 2024, about 30 months after diagnosis. We had hoped for a slower progression but in her case it was not to be. As I'm writing this it's been 6 weeks since she died. Anyway bottom line is nobody knows how long they have.
All the science we have and there’s nothing to stop fibrosis? Unrelated but I got Peyronie’s disease from reactive arthritis which was cause by a jaw infection in 2015. Been in the active phase since then and it’s gotten so bad doctor is talking about a possible penectomy due to having so much fibrosis and almost no blood flow.
My sister was just diagnosed. She landed in the hospital and left a week later on oxygen 24/7 and a half dozen pills. She has a huge mass on one lung and the other is like Swiss cheese. I don’t imagine she will be here long…..
I have been diagnosed with mild fibrosis in the lower lobe of the lung. I do not know what that means. Does this mean that it is ocular fibrosis? I have not received any treatment from doctors. I do not know why I am afraid, but the doctor does not pay any attention to that?
Why there aint no more studies on this ipf Even they found medicine for covid very fast Y not for this ipf???? Please do more studies and stop it Yesterday only we came to know that my mother has this ipf I was devastated crying, but should we do 😢😢😢😢😢😢😢 Please someone find something for this
Thank you ❤ I've had this cough for about 6-7yrs it progressed from just a running nose being sick every other month to every month to every week I'm guessing bronchitis and the cough verys sometimes it's an hour or two or a day or a day and a half of straight clearing my airways it's quit embarrassing and not to mention the noise I feel bad for neighbors and I can't find a way to deal with stress better and still smoking cigarettes. I'm too scared to go see the Dr
I was diagnosed in Jan 2024. Dr. wants to start me on Esbriet very soon. Scary stuff. I am 65 athletic non smoker. Had pneumonia last March. They found scarring in same place as pneumonia. Could end up lung transplant.
I have just diagnosed with minimal subpleural fibrosis both lung apices. I wanna understand more about this. What does the findings means? I only hear the word IPF, what’s the difference between the two? Is the findings for me is more risky? I hope i can get an answer pls. Thank you
My mother was suffering from ILD since 2020 We try our best But nothing work She Died on 31st March 2024 Infection in lungs is increasing During the treatment. She didn't smoke or do anything but still they have ild....
@@Lizbeth36961 She was At the age of 64yr old. Lungs are infection rise and start honey combing... Anyways Dnt Ask any one in this Channel or Google go to doctor and consult your self... You will be ok soon dear... Make you life style better this will help you a lot.
@@Lizbeth36961 Some time ILD caused by Pet/bird/cat.. There is no specific reason And my mom was on honey comb stage in October 2023 For you dnt ask about ild consult your doctor b cz every person have different life style. Google and YT only suggested not correct
@@Lizbeth36961 Some time ILD WITH Birds and Dust particles We never know what the main cause .. You must diagnosed and do proper diet and young. Is the best option I guess
Hi sir, On oct 7, 2023 My wife (age-26yrs) has undergone a bronchoscopy test (biopsy)and is diagnosed with ILD - PPFE. What is the treatment for this ? Is it curable? Note: Her younger brother died with the ILD NSIP disease at the age of 19. (Consagenous marriage to her parents). Can you please respond as soon as possible?
If possible plz share the communication id email or WhatsApp number so I can share all the diagnosis details. Doctors prescribed 3 weeks medicines -capsule Omnacrotil 40mg morning dose, nebulizer 3 time, and in case of cough Benz perl , syrup Lupituss. Can we plan for an online consultation? We have lost hope for treatment but With god's grace in case treatment options are there then I am trying to get possible treatment for her.
What if the CT scan includes atelectasis, subpleural reticulation and multiple irregular streaky linear densities, in addition to fibrosis? What does all of this mean? I was just diagnosed and am waiting for the follow up appointment.
Dr Stephan ... I have noticed you have not answered the questions that Utubers are putting to you. My sister died of this condition, and my friend has been diagnosed with it. Please answer the comments placed as people ae awaiting your answers. I know you are busy.
I have IPF and take OFEV for the past three months. I too have dry cough and mucus build up. I found that eating hard candy helps alot, Life savers, jolly ranchers, werthers, etc. hope this helps
Hi I'm really thankful for your info and explanation, my question is lung scarring, same as pulmonary fibrosis? I find out i have lung scarrin when a ct scan for a bladder problem was requested, my dr, never told me until i asked him and he said it was a scar of a viral an old infection i don't know the scan showed scarring lung bases, what do you think, thank you.😊😊😊
It simply means a small amount of scarring showing at that time. Scarring can happen slowly, or rapidly. No one knows when it will speed up or for how long it will be sped up. It can come and go in waves. During the faster spreading times, there will most like be a very noticeable drop in health and activity. There is no time table for every patient.
Thank you for presentation. My husband had p for 16 years but it was stable. He had CT scans each year and it was not progressing. During the COVID epidemic he had his first vaccine in spring 2021 and 2nd vaccine in July 2021. Within 5 months he had lost a lot of weight…was struggling to breath was was put in intensive care, he sadly died in Feb 2022. I have read studies that say Cvi vaccines exasperate of problems. I am still devastated by the loss of my husband at only 68 years old.
Lorna Ferrari
Toronto Canada
My Mom died of PF which was instigated from a bad case of chicken pox, which she was told also landed in her lungs. She was also a smoker (never a good thing). She was diagnosed at about age 33-34 and managed to survive until just past her 50th birthday in 1986. Have really appreciated your videos to help me understand how she suffered & why. It's been healing :)
Thank you so much for explaining this!!! I was recently diagnosed and im now waiting on my test results which is very stressful. I feel much better now after watching your video. Thank you again. Im sure your video has helped a lot of people understand what they may be facing.
I was diagnosed october 2020 and in November diagnosed with emphysema at 62yr I am now 66yr.. I had to leave my job a year later.. I have now been on oxygen since 2022.. now at 5 and just recently put on 24hrs a day.. I constantly get chest infections.. I have great nurses keeping close eye on it.. my daughter is a great help to me and works full time ( she lives near me).. this is a very debilitating condition and very frightening.. I wish all the best to anyone living with this disease.. please pray for a cure..
I'm was recently diagnosed with u.i.p and this was the first video I heard you say anything about it and I'm just having a hard time learning anything about it from my doctor or online.I was really hoping maybe for to your video you could do one about u.i.p because the way you explain things just makes it easier for me to learn.Thanks for your time and I look forward to seeing more videos
Hello sir my mom too has u.i.p plz give advice
My terminal disease diagnosis of IPF two years ago is scary. Dr. Stefan Christian Stanel presents MORE than just the pessimistic news I see on the internet. He provides information that can give hope and some optimism to many of us with IPF. Although there is presently no cure, he stresses the fact that no two cases are necessarily alike. There’s much general information we should know and should discuss with our physician. Thank you, Dr.Stefan, for your approach that we learn more than just the dismal stuff we read on line. Your concern for our being “well informed” and to search out all the facts about our own specific and unique case is commendable. Your genuine interest in keeping us well informed is commendable. Thanks again. 👍
I agree with everything you said.
I was diagnosed 9 years ago, though I knew something was wrong 6 months to a year before that. I'd step outside and have to come back inside pretty quickly. I'd tell my wife "Whew! There's not enough oxygen out there."
Yes, 3 to 5 years average may be true, but it's not by any means set in stone. My doctor told me that I wouldn't make it to see 60, but here I am. I turned 60 on Christmas day, 2024.
At this point, my o2 level can drop into the high 70's from walking less than 50', but it can also stay in the high to mid 80's for the same amount of time/distance. For me, the worst times are getting into and out of bed, or in and out of the shower stepping over the tub. Those can be very scary moments.
I don't always use my supplemental O2. Actually, I hardly ever use it, unless I leave the house. Then, I always have it running. During those times, my portable concentrator can't keep up with my needs, but I'm too stubborn to give up and sit down and die.
If I could give advice to anyone, I'd say don't stop living your regular life. Don't sit down and rot away. Do as much as you can, within reason. Walk around the house. Step outside and enjoy the view. Listen to your body when it tells you that it needs a break, but don't give up.
*Two dr visits ago, my dr walked into the exam room and his first words were "You're still alive?"
*My last visit, as he was walking out of the room, I had a fierce coughing fit, which can be normal for IPF patients. He stopped at the door and said "That's what's going to kill you."
I have had asthma for and GERD for decades and now have scarring in my lungs and COPD from the inflammation over a long time period. So as far as I know, my diagnosis is pulmonary fibrosis from reactive airway disease (asthma) and severe GERD. I also have an extremely rare genetic metabolic disease called Variegate Porphyria, that can also have a pulmonary component. I have appointments with specialists soon, so now it's just hurry up and wait (lol). So right now I'm just taking things one day at a time and doing what I can to stay as healthy as I can. I'm 64 and have no family history of PF or asthma but both of my parents and both of my siblings have all had GERD. One brother has it worse than I and now has Barrett's Esophagus (a pre-cancerous condition). Once I see the specialists at my upcoming appointments, I will regroup and make a plan for lifestyle, diet, and medication changes - whatever can have a positive effect on my health.
Thank you so much for giving me some idea of life expectancy. Your information is greatly appreciated.
I'VE been on this earth for 77 years. I was diagnosed with IPF in 2021. I've heard that life expectancy is 3-5 years. Im not afraid of death because I have a savior who promised a resurrection some day. I believe Him. This life on earth society wise has deteriorated through my life time so much that I'm ready to check out. Things are getting so crazy today. Hatred and strife everywhere one turns.
Death is just a step to eternal life in Yeshua Messiah. Again, I have no fear of death. It's a natural process. Blessings to all.
amen
I’m in my 10th year, and share your belief. Keep the faith and maybe we’ll meet on the other side with our savior.
@@steve-fy4pk I'm sure we will. God bless you Steve
You must be Muslim
Amen! 😇
This is really informative as I was also diagnosed ILD NSIP familial this July, I had review on 16th Oct and doc checked my condition said it is stable as of now, I keep listening to information shared by Dr Stefan and this really helps to understand what I am going through.
How are you now ?❤
@@nada-io1dd hi I am stable, have issues like my heart rate goes high when I walk or do normal activities oxygen level also goes down , but the moment I sit and relax just for couple of minutes It fix , definitely have a restricted life.
My dad sadly died two weeks ago from ipf he worked in construction and was first diagnosed 2 years ago... I am hoping there will be a cure very soon so nobody has to go through it like my dad.
Blessings to you and your family. Sorry for your loss
Om shanti
Hello my name is Sheila and I would to tell you I am deeply sorry for the loss of your dad!
My husband has just recently been diagnosed with IPF. And this has been devastating to us as I'm sure you are completely aware, receiving such news. I am looking into everything possible to get more educated especially from others whom have this diagnoses! Maybe if you wouldn't mind, we can become friends for further info. Thank you for your time.
@@sheilaburnett3370my father has been diagnosed PF. I would like to know more about this. Plz share what treatment ur taking
@@sheilaburnett3370how is he now
Thank you for sharing this important information
I’m 78 years old and a Vietnam veteran that was exposed to Agent Orange. I was given a chest CT scan for a possible pulmonary embolism, and an incidental finding of lung scarring and nodules showed up. I’m going to check in with my Primary Physician tomorrow for a referral to a specialist. I think the Agent Orange exposure is the culprit, but that’s just my opinion. Thank you for your professional expertise.
God bless you and thank you so much for your sacrifice..Get a lawyer.
Please go to the Veterans Administration. They can help with the Agent Orange issues.
I'm 73 and got IPF from a Covid attack. My CT scans are not good and are not getting better over time. Right after I got IPF I also had a heart attack two days later. I had been going to the gym just about every day and my cardiologist told my family after he inserted SIX stents that he had no idea how I was still alive other than I was in excellent shape other than my heart - which he had now fixed, even upgraded.
Now my only hope is research scientists coming up with a cure for Pulmonary Fibrosis. Since they fixed sickle cell I suspect a similar fix with CRISPR and nanoparticles might be the research path.
I just wish there were a well-maintained database listing all current research and clinical trial future possibilities. I would be a candidate.
Thank you for the very helpful and detailed videos !
Thank you for this information!
If your coughing what I did I bought lung cough tonic n health shop. I also bought mullen it's good for respiratory . I was diagnosed 2017 n I'm doing good than 2018. I'm doing exercise in d morning under d sun 15 minutes. Lung exercise.
can you please clarify what you bought? thanks
My Dad has Severe Progressive Lung Fibrosis caused from when he was in the Military and he worked Around Nuclear Bombs that he had to move on and off his B-52's he was working on. He was an Aviation Mechanic In. The Military. Then when when he got out of the Military he became an Auto Mechanic and he did alot of Aspestos Brake Jobs....For 25 years.
How old was he when he passed ?
Please give me information regarding Chemotherapy (Paclitaxel) and radiotherapy induced Lung fibrosis
My dad is in the end stage of this. I hate it . Why does this happen why ? Still not cure in this day and age .
Thank you 👍
I was diagnosed (by biopsy) in 2014 (sure I had it before then that’s what sent me to Cleveland clinic) it’s 2024 and I’m still here. I’ve cough uncontrollably all along, and have been in 4 clinical trials for it (no help). I just had a bad lung infection (probably from not being good at cleaning my cpap machine). Give lots of steroids (which makes me feel like a million bucks) and am weaned off now. Having difficulty now with catching my breath even with 3-4 liters of oxygen. Despite the pulse ox says I’m at 94-95 (really misleading). Tried quite a few natural things with no avail.
My mom was diagnosed with early stage fibrosis caused from severe GERD.. do you think if she gets the GERD surgery to eliminate the acid that the progression will be slowed down?
Me to having gerd n o have suffer plurel effusion
My mother has been diagnosed with early onset of IPF with UIP pattern of scarring. She is 55 year old and has diabetes too. She has been suffering for over 5-6 years now but the diagnosis happened only this year. What should I preparing myself for?
How is she now
@@narayan12376 She is fine. The doctors don't seem too concerned. She does get bouts of severe cough but otherwise she is able to manage basic household chores along with taking care of herself and my father.
@@vilearninglife4723 good to hear.god bless
My husband was dx with IPF about 3 yrs ago..fast progression. O2 24/7 past year...8 lts now. Recently dx with bladder ca. I question all the vaccines in the past 2 years? Is there a connection?.
Was he diagnosed mild?
My brother has been diagnosed with ILD with Autoimmune Disease in Jan 2024. He is 24 years old. Why medical researchers are not able to find the complete cure or reverse the scarring of lungs tissues yet?
How about minimal scar right lobe fibrosis doc is it harm?
She told me that I have mild fibrosis in the left lobe of the lung, but no one talks about it
Thank you.
Question - can the scaring ever heal themselves? Reason being is will a person ever be able to stop being dependent on portable oxygen?
Unfortunetly not. I have IPF and talking with my Doctor the damage is done and cannot be repaired just slowed down. I run 3L and can see the difference when im not on the oxy. and pretty much know that this is my life from now on.
@@Teenagegoogoomukhang in there, this ipd sucks
@@Teenagegoogoomukwhat if it’s mild ??
@@Lizbeth36961 From what I have learned it can not be healed or cured. OFEV prolongs the deterioration but not a cure.
Unfortunately a lung transplant is the only way now. I quit everything and have gotten a little better from when it started but again it's the meds helping me feel better.
StEm cell regenaration .. is it helpful to PF?
Thank you so much for all the information and giving me hope with your explanations!
The absolutely longest non-answer I have ever encountered. Wanting to know what is ahead is not “looking in dark places” Pulmonologist will proffer answers without having a clue. I am near the end of my journey with IPF and never received a straight answer.
💕🙏🏻💖🌟
yeah. so little hard info.'i hope you are still alive., i have no idea what timeline to plan for
There are no hard answers. This doctor is clear & accurate. It is a highly subjective disease. Variables are many. I’ve had it 4yrs now. I’m on OFEV. I am on 24/7 supplemental oxygen.
Two of my paternal uncles died short of three years. However, they weren’t healthy and strong at diagnosis. I was and still am.
Huge unknown as to how long we actually live🤷🏻♀️
Sending well wishes ❤
Non-answer? This doctor gives about as clear an answer that I have read so far.
Sorry but there are no hard and fast answers. Without knowing any of the specifics of a particular case, the information given is about as clear as it could possibly be. As he says, talk to your doctor about your particular case if you want a better estimate. But it still in the end boils down to, "everyone is different".
My wife was diagnosed with IPF in March 2022. She had already lost about 30% of her lung capacity. She had pneumonia in 2018 and the x-rays then did not reveal any scarring. So it probably began sometime during those 4 years. She quit smoking before the pneumonia. She had been a light smoker, fewer than 5 cigarettes a day. She got Covid, a mild case, in the fall of 2020. After the diagnosis she was on OFEV for a year but couldn't tolerate the side effects, which were getting more severe over time. She opted not to try to qualify for a lung transplant due to the onerous conditions imposed by the medical establishment. She died in September 2024, about 30 months after diagnosis. We had hoped for a slower progression but in her case it was not to be. As I'm writing this it's been 6 weeks since she died.
Anyway bottom line is nobody knows how long they have.
All the science we have and there’s nothing to stop fibrosis? Unrelated but I got Peyronie’s disease from reactive arthritis which was cause by a jaw infection in 2015. Been in the active phase since then and it’s gotten so bad doctor is talking about a possible penectomy due to having so much fibrosis and almost no blood flow.
My sister was just diagnosed. She landed in the hospital and left a week later on oxygen 24/7 and a half dozen pills. She has a huge mass on one lung and the other is like Swiss cheese. I don’t imagine she will be here long…..
I have been diagnosed with mild fibrosis in the lower lobe of the lung. I do not know what that means. Does this mean that it is ocular fibrosis? I have not received any treatment from doctors. I do not know why I am afraid, but the doctor does not pay any attention to that?
Why there aint no more studies on this ipf
Even they found medicine for covid very fast
Y not for this ipf????
Please do more studies and stop it
Yesterday only we came to know that my mother has this ipf
I was devastated crying, but should we do 😢😢😢😢😢😢😢
Please someone find something for this
Thank you ❤ I've had this cough for about 6-7yrs it progressed from just a running nose being sick every other month to every month to every week I'm guessing bronchitis and the cough verys sometimes it's an hour or two or a day or a day and a half of straight clearing my airways it's quit embarrassing and not to mention the noise I feel bad for neighbors and I can't find a way to deal with stress better and still smoking cigarettes. I'm too scared to go see the Dr
I was diagnosed in Jan 2024. Dr. wants to start me on Esbriet very soon. Scary stuff. I am 65 athletic non smoker. Had pneumonia last March. They found scarring in same place as pneumonia. Could end up lung transplant.
Esbriet has really prolonged my condition. I’m in my 10 th year with it, but feel like it’s catching up with me. Good luck
I have just diagnosed with minimal subpleural fibrosis both lung apices. I wanna understand more about this. What does the findings means? I only hear the word IPF, what’s the difference between the two? Is the findings for me is more risky? I hope i can get an answer pls. Thank you
Dr. I hope you are familiar with the tipy of the fibrosis I have. Is cwll Hermansky-Pudlak syndrome. A very rear kind of it.
My mother was suffering from ILD since 2020
We try our best
But nothing work
She Died on 31st March 2024
Infection in lungs is increasing During the treatment.
She didn't smoke or do anything but still they have ild....
I never smoked a day in my life, I was diagnosed MILD ILD. What stage was your mom at? Thank you
@@Lizbeth36961 She was At the age of 64yr old.
Lungs are infection rise and start honey combing...
Anyways Dnt Ask any one in this Channel or Google go to doctor and consult your self...
You will be ok soon dear...
Make you life style better this will help you a lot.
@@Lizbeth36961 Btw Do you have any pet or bird cat at home ??
@@Lizbeth36961 Some time ILD caused by Pet/bird/cat..
There is no specific reason
And my mom was on honey comb stage in October 2023
For you dnt ask about ild consult your doctor b cz every person have different life style.
Google and YT only suggested not correct
@@Lizbeth36961 Some time ILD WITH Birds and Dust particles
We never know what the main cause ..
You must diagnosed and do proper diet and young.
Is the best option I guess
Hi sir,
On oct 7, 2023 My wife (age-26yrs) has undergone a bronchoscopy test (biopsy)and is diagnosed with ILD - PPFE. What is the treatment for this ? Is it curable?
Note: Her younger brother died with the ILD NSIP disease at the age of 19. (Consagenous marriage to her parents).
Can you please respond as soon as possible?
Are you based in UK
@@dorothaj
No , I am from India living in Bangalore.
If possible plz share the communication id email or WhatsApp number so I can share all the diagnosis details.
Doctors prescribed 3 weeks medicines -capsule Omnacrotil 40mg morning dose, nebulizer 3 time, and in case of cough Benz perl , syrup Lupituss.
Can we plan for an online consultation?
We have lost hope for treatment but With god's grace in case treatment options are there then I am trying to get possible treatment for her.
Hello Doctor,
I didn't hear anything from you.
Can you please respond as quickly as possible?
@@dorothaj i am based in uk and my mum has same issues
What if the CT scan includes atelectasis, subpleural reticulation and multiple irregular streaky linear densities, in addition to fibrosis? What does all of this mean? I was just diagnosed and am waiting for the follow up appointment.
Dr Stephan ... I have noticed you have not answered the questions that Utubers are putting to you. My sister died of this condition, and my friend has been diagnosed with it. Please answer the comments placed as people ae awaiting your answers. I know you are busy.
Was your sister diagnosed with mild ILD?
In your experience, whats the longest you have seen anyone living with IPF ?
20+ years with regular walk and basic work outs with light weight.
@@amitorlogisticsyour known?
@@amitorlogisticsit's good to hear
i had covid back 2021 ct scan show lungs scaring that my pulmonologist told me i see him once year i get frustrated i am on oxygen at night
Hello sir, my mom had scleroderma with ild she is taking nintedanib for that but she is coughing so much a day is there any prevent for dry cough
I have IPF and take OFEV for the past three months. I too have dry cough and mucus build up.
I found that eating hard candy helps alot, Life savers, jolly ranchers, werthers, etc. hope this helps
YUP -candy for lung disease - medicine has come a long way!
@@robertstellato5172 it was in regards to the cough, not lung disease!!
I had COVID left me with fibrosis in lungs what can you tell me to expect
My dad died last month from this SILENT killer. No symptoms til it was too LATE!!! I will Not allow it to SNEAK up on me!!!
My Dad has just been diagnosed 😢
My dad too just 2 weeks ago 😢
I have minimal pulmonary fibrosis,please advise me.
Same po tayu
@@DesireeBanzoncheck zinc, resveratrol, nad supplementation
If you acid reflux get acv, eno to control it
🙏
My mom died 1 month before in ILD 😭😭,
How long after she was diagnosed?
does having residual fibrosis in upper lobes mean i have pulmonary fibrosis?
i uploaded a video now that hopefully clarifies the terminology
"I've been using Planet Ayurveda's supplements and I'm thankful for the relief they've brought"
Cant watch any more of this, i'm depressed enough as it is. Hate everywhere on google do you want to know how long youive got! NO I DONT"
Such a brutal pathology…………..slow and very painful way to expire
Thank you, very helpful
Watching my mom suffer from this too…this is heartbreaking
My husband got 2.4 years. His decline was stair step for about 4 weeks then rapid decline 6 days gone
There is a cure. I just did an umbilical cord stem cell transplant in Bangkok and it completely reversed the condition and healed the lungs.
what were you diagnosed with and when?
May I get the address and email please
Can u elaborate what has happened which disease and hw much it got cured and how's patient oxygen level while doing activity
Congrats!
Hi I'm really thankful for your info and explanation, my question is lung scarring, same as pulmonary fibrosis? I find out i have lung scarrin when a ct scan for a bladder problem was requested, my dr, never told me until i asked him and he said it was a scar of a viral an old infection i don't know the scan showed scarring lung bases, what do you think, thank you.😊😊😊
Can somebody help me understand what "minimal fibrotic scarring" means?
It simply means a small amount of scarring showing at that time. Scarring can happen slowly, or rapidly. No one knows when it will speed up or for how long it will be sped up. It can come and go in waves. During the faster spreading times, there will most like be a very noticeable drop in health and activity. There is no time table for every patient.