My mom got diagnosed with ILD Feb. 22, 2024 and im currently sitting in ICU waiting room. She is in resp failure and k8dney failure. She needs a miracle from heaven abo e to stay with us.

@arunche8222

2 күн бұрын

My prayers

Steroids not good for me i been taking 6 months i stopped my bone crush with that medecine. After taking lung cough tonic bought in health shop stop my coughing. Now im taking mullen tablets bought health i feel good i was diagnosed 2017. And thanks lord still alive.

I was on both Esbreit and later Ofev. Also pulmonary rehab a few times. Eventually lungs declined and received a double lung transplant @ a year and half ago. I feel the treatments bought me time and the rehab helped with my strength for the procedure. Doing well so far. Having support and staying positive is very important. Good luck to all as I know your journey. And THANK YOU to my DONOR and all the Medical staff for my being here. And especially my WIFE, stronger than me.

@polaris7122

7 ай бұрын

When should you start taking Ofev? I have been diagnosed with ILD in March 2022 and I am still waiting for the doctors to tell me anything!

@cjknavy3003

7 ай бұрын

@@polaris7122 Both of the fibrotic meds are only being used for IPF. My understanding there are a lot of different ILD. Best to follow up with your doctor if these would work for your diagnosis. These two drugs work to slow the scarring of IPF. Others may help your situation. I can also recommend a structured pulmonary rehab. What they can teach you about breathing, exercise, and a group of people with similar conditions were a big help to me. Wish you well.

@AnnHurrell-wl5ub

3 ай бұрын

I need ​@@polaris7122

@khizerjavaid9373

2 ай бұрын

My brother is diagnosed with this disease ,he is in usa,i will send your e mail to him so that he can have some advise from you

@robertcampos2294

24 күн бұрын

How is your body taking the meda after the lung transplant?

You're a great communicator. Totally different to my former consultant. Travelling all day to have a rushed conversation with him and travelling all night to get back wasn't on. My medical records weren't complete leaving out x rays,ct scans I got before I was referred to him. Sent them to him,pissed him off,too busy to read explanations. So, keep up your videos.I find them very helpful.

You are the best tutor I've ever come across.I suspect I have this illness. I can take this wonderful information moving forward. I have crackling sound when breathing and I cough mucus every single day. Unfortunately I have hospital phobia.Last year I went for oral surgery and my bp rose so high I thought I would drop dead on the spot! Thanks for this wonderful educative video 👌🏽🇿🇦

Thank you so much, Dr Stefan. I look forward to further videos. I’ve listened to your other video and subscribed. My husband has IPF. Hod bless you 🙏

Excellent information and options presented so clearly - fabulous resource as there is no one right answer and faced with a serious diagnosis, this information is very helpful to seek the right treatment to prolong each patients' quality of life. Thank you Dr. Stefan

@haridascg6698

10 ай бұрын

Very useful information

Thanks for leaving the comments on. My husband tried ofev was on it 5 months. His kidney liver numbers were going down he had to stop taking it. A year later he’s kinda stable. Everyone is different and not many of the caregivers have answers either. Like no1 knows. Hugs to everyone going through this and their loved ones and caregivers

@pmartin7397

5 ай бұрын

Did he try Esbriet instead of Ovef ? That's the other antifibrotic medication . I couldn't take ovef. It left me exhausted. I'm taking esbriet now. No side affects so far . Stay strong !

@cskiles318

5 ай бұрын

@@pmartin7397 he took ofev but twice it hit his liver and kidneys just couldn’t risk it. And now we have learned he has pulmonary arterial hypertension. He is losing weight. They arnt an option at all. He’s to weak now. Thank you for reply

@cjknavy3003

2 ай бұрын

@@cskiles318 Mine was similar the PAH was diagnosis from ECG. But later heart catheter showed was better than imaging as imaging is more of a guess. What I’ve learned is everyone’s different as there are many causes. Some are steady for many years, others decline in steps, and the last category acute exacerbation. This is rapid decline. I treated, tested, and monitored for close to two years. Declined quickly last few months and received Double lung transplant. I’ve just enjoyed two years post transplant. My advice is be your own advocate, seek the best treatment, and stay strong. If not already doing try pulmonary rehab. It helps to teach breathing, exercise, and hope to monitor how you feel. I believe pulmonary rehab helped me stay strong until I was ready for transplant. Pulmonary fibrosis foundation ok for resources try not to follow internet too much. Lot of outdated info.

Thank you for a clearer understanding of lung disease, I appreciate you very much, hopefully we can find a cure in the future

Great Video!

I just completed three weeks of umbilical cord stem cell transplants in Bangkok to treat IPF. I now have no symptoms. My blood oxygen is 99. I can run, sing, play trumpet and exercise again. I have my life and my health back.

@annalucinda8273

18 күн бұрын

That's terrific news. I would be interested in knowing the name of the hospital and how much your three week treatment cost.

@mohdmohsin9369

15 күн бұрын

Pls do share the details of the hospital

Thank you for this information. I see my pulmonologist next week.

Thank you you're video was extremely helpful

Thank you very much. That was an excellent presentation. It couldn't have been clearer.

Great sir Explained clearly about Antifibrotic drug Thanks

Great video thank you😀

I have been taking Ofev for 4 years now. It has slowed my disease down but my health is bad now. If id had not taken Ofev, id be in heaven two years ago. I currently have use of one lung and its filled with scar tissue. Good luck everyone. I am waiting for my escort to heaven.

The cause of pulmonary fibrosis is oxidative stress ! The oxidative stress is cause by nutrient deficiencies. Deficiencies of zinc , vitamin D and vitamin A can cause fibrosis in your organs , lung , kidney heart .

I'm IPF patient since 2018. I am taking Pirfenidone 1200 mg per day. I am feeling much better. In addition to Pirfenidone , I spend good amount of time on physical exercises and breathing exercises which really help in controlling the progression of disease.

@bimalbhattacharya856

5 ай бұрын

Sir where are you from? Was it diagnosed early?

@Kavi_Trends

4 ай бұрын

Hi sir can u say when it diagnosed

@user-tq2oe5sr6g

4 ай бұрын

@@Kavi_Trends I was diagnosed after 4-5 months. It was diagnosed after HRCT scan and lab tests.

@Kavi_Trends

4 ай бұрын

Is this manageable my father age is 60

@user-tq2oe5sr6g

4 ай бұрын

@@Kavi_Trends Yes. Why not. First and foremost lesson is to be fearless and rest follow with the help of exercises, Spirometry, balloon Blowing, prescribed medicines, diet modification, life style changes etc

Great sir.Really Useful sir.Thanks sir

Thanks am still trying to understand what is going on in my case spend 7 days in the hospital 🏥 from Jamaica 🇯🇲

Very useful sir thank you sir

One of my friend was diagnosed that year with this sickness,but this was beginning for him last year In his house lots of things,like millió pictures everywhere,and other things,what his mother collected over long years They very very dusty,but he just want keep them

Thanks doctor

After carrying a chest CT scan, my wife has been diagnised with fibrosis

I was diagnosed with NSIP, after a crises, May 2020. I have deteriorated over the last 6 months and, was last Monday put forward for assessment for a lung transplant. Chemical treatment has slowed progress a little, but not enough.

Thank u m taking both medicine.

TY Doc.Have you heard anything about Ivermectin being looked at as a treatment?

Thank you so much for the good explanation dr Stefan. Hoping one day we have medicine to remove the lungs scarring. God bless and more power 🙏

@InterstitialLungDisease

10 ай бұрын

There is a lot of research being done but I only spoke about what is currently approved and available. I may do another video soon about what is in the pipeline in clinical trials (not yet approved) as this may be useful for those who are considering participating in clinical trials

@benmichael8088

9 ай бұрын

AMEN!🙏❤️🙏 I pray about this. Wish you well🙏

@muqtadeershaik1272

Ай бұрын

Sir, can you please upload a video on upcoming clinical trials for removing fibrosis

My uncle in Romania has pulmonary fibrosis, probably from having had severe TB associated ARDS in his youth. Are you aware of any clinical trials for PF in Romania, or what the clinical trials website is for Romania?

Thank u for the info.. But can u provide me what to do : breathing excersise. What kind of sport better. Spirometry etc. Thx

@patw5550

2 ай бұрын

Check out Breathing better with Elizabeth... KZread

my cousin is in univ.of michigan with ipf hope they have something for him

I am not a doctor (I have done other studies) but I understand that pulmonary fibrosis involves having scars on these organs but I am sure that there must be some non-invasive remedy (and I don't think even too far away in time given the great medical discoveries in recent years: I am an optimist by nature) capable of dissolving these scars and restoring a good part of the compromised tissue... I think that something from a pharmacological point of view or similar is already in the "workshop"...

Thank you DR.. Does exercise regularly and do cardio often would help to strengthen the lung ability to deal with fibrosised lung?

@InterstitialLungDisease

10 ай бұрын

Most likely yes

Dr, Please . I ve mushroom soup which I like . Can be not good for my pulmonary idiopathic F. Thxs Dr

Thank you for this video. My 84 yo father was recently diagnosed. Waiting to see Pulmonoligist. We believe the scarring came from his 40's ... 10+ years of wood sanding (walnut). The scarring is old they say. * He is going downhill... fatique from anything strenuous. He was just placed oxgen for sleeping. My question is, if we get him going with a good Pulmonary Rehab and exercise program (with oyxen) can we stop the spread of the scarring? in other words...Do old 45 years scars get worse? We are not sure that we want to have him take medicine. (risks may outweigh benefits, we are thinking already) Was hoping that he could successful live with what he's got, and make his last years as comfortable as possible through pulm. rebab and O2. Thank you.

What are " multiple streaky linear densities" on a CT scan of lungs?

Very many home renovations in my town, a bout of pneumonia has now left me with IPF. 65yrs young. It sucks having this out of breath, luckily only one lung is fibrotic.

@TJ-Dives

Ай бұрын

Now both.

My known was suffering from R.A for 15 years..she was taking ayurvedic medicines for that..then about 1 year back she switched to modern medicine (methotrexate,prednislone,sulfalazine etc) she then start coughing n felt breatlessness....after HRCT chest done..it is found she has developed ILD (UIP PATTERN)...now doctors are unanswered what triggerd ILD...R.A or methotrexate.. Which treatment now she should go for ..kindly suggest

I have Pulmonary fribosis polimoyositis is any remedy for tha pls

There are a variety of meds post transplant some have side effects for some people. My medical team are very good at monitoring, adjusting dosage, or taking a different med altogether. I get shakes from some meds but I can deal with this so I can keep my new lungs. By shakes I mean shaky hands. When that med was higher dose it would cause whole body shakes.

I am suffering from fibrosis. Diagnos from February. But i felt symptoms from 2021. In 2020 my 2 dogs had parvo. Now they are perfectly fine. I want to know that it can be a reason for fibrosis???. Let me explain

Hello Dr. Stefan, My mom is 68 years old- one dr. diagnosed her with COPD another wanted to do a biopsy because could not give a diagnosis, he referred her to a Lung Transplant Surgeon whom diagnosed her after one exam with Pulmonary Fibrosis- right away wants her to be evaluated for Lung Transplant-- we are very confused at this point. Her symptoms are: shortness of breath while walking long period of times (oxygen goes down to mid 80's) some coughing in the morning. Was never a smoker, never worked around asbestos, nor has she been exposed to anything else that would cause pulmonary fibrosis .What do you recommend? Thank you so much in advance!

Do you think CT scans are the best way to monitor the progression of the Pulmonary Fibrosis?

Hello, Doctor - or anyone with knowledge regarding this... I had gotten a CT scan with contrast, for actually another condition involving my urinary tract. The lower portion of my lungs and other organs were also included in the imaging. I was completely surprised by the findings: Subpleural reticulation, fibrosis, or atelectasis, in bulibasilar and basilar lobes. I have never smoked, don't have any occupational history, and don't have a cough, I have not had pneumonia or surgery. I am a 60 year old woman, active, and of normal weight. I am awaiting an appointment with my primary care doctor and a referral to a specialist - the urologist who ordered the CT scans couldn't comment on this as it is not her specialty... I am wondering what on earth is going on - After Googling these conditions I am very worried.

I was prescribed Amiodarone for my atrial fibrillation in Aug. 2023. I developed Amiodarone toxicity in both lungs which created scarring to my lungs. Previous CT scans indicate progressive scarring and the ILD specialists are recommending Ofev. I'm somewhat gunshy about this medication: 1)it's expensive and 2)the listed side effects cause some concern since the Amiodarone wasn't supposed to cause the problems that it did. So, for those of you taking Ofev, are you tolerating this medication? Have there been any serious side effects? Is Ofev actually slowing down the progression of pulmonary fibrosis? Thanks!

@patw5550

2 ай бұрын

My husband taking ofev for 2 yrs now. Side effects different for everyone, worst is liver damage. Blood test every 6 mths to check. Regular diarrhea, he skips a day's dosage to calm his belly. Nausea, a pill aft meal. Stabilized but recently nosedived. Everyone has different pattern of evolution. Some degrade slowly, some violently, then stabilize... or not.

Thank you it’s very well explained I am Usha Mehta I’v been resent diagnoses IPF and told there’s no treatment for the disease

@polaris7122

7 ай бұрын

There is no cure, just medication to slow it down!

@Kavi_Trends

4 ай бұрын

@@polaris7122 can u say what ur doing now

Dr,what is band-like density associated with diaphragmatic tenting

@lindahansen9239

10 ай бұрын

😊

Father just diagnosed. Did untreated pneumonia cause it???

My pulmonogist saw my test and hrct test He says it's not progressive and does not require treatment What you say about it?

What is your opinion on starting methylprednisolone 2mg/kg for exacerbation of ipf for some days, and later deciding on the definitive “treatment” after getting all the necessary tests done?

Hello Dr I’ve just come across your video, and very interesting. Thank you for your detailed explanation. My husband suffers from IPF and was on Nintedanib for three years. His blood pressure was very high throughout, and as a result ended up with AAA = Abdominal Aortic Aneurysm, so the hospital discontinued the Nintadenib. After a few months, he is now on Pirfenidone. He has also been on steroids - Prednisolone and Morphine. He coughs a lot. I would appreciate speaking with you or even email contact. I look forward to hearing from you. Thank you so much, Doctor🙏

@alicesais770

23 күн бұрын

I’m praying 🙏 for you and your dear husband, my husband also has PF and has coughing issues.

"Malva-H: Breathing Better, Living Fuller! 🌱

Hope IPF will be reversible soon. I am a patient of IPF . TAKING Perfenidone.

@user-sw8wb6qi3i

27 күн бұрын

How is it working for you? My mother is taking it too

Does fibrosis cause COPD or this is a completely different disease? Thanks

@polaris7122

8 ай бұрын

Different diseases!

MINIMAL PULMONARY FIBROSIS, BOTH UPPER LOBES ...this the 2nd reading to my x-ray 😢😭 ..what's the best treatment this pls....

@estellar.367

2 ай бұрын

looka diferent doctor also reserach about longevity, and scenecence to fing extra help. there are also people gitting help with cold laser terapy. see fibrosis forums research aou al what food kan help help her, look for trcotienols, glutation and cordyceps and there is much more.

My mom was diagnosed with this 2 years ago. She is on ofev and the side effects are horrible. It causes her diarrhea to the point that she can't leave the house and can't hold it when it hits her plus stomach pain and gas and NO APPETITE. She hardly eats. Very llittle progression in lungs when she has her scans which is good. She is on oxygen too. Trying to get her to see a different Dr and get a second opinion for other options. The ofev is killing her. P.S. she is 73

@estellar.367

2 ай бұрын

looka diferent doctor also reserach about longevity, and scenecence to fing extra help. there are also people gitting help with cold laser terapy. see fibrosis forums research aou al what food kan help help her, look for trcotienols, glutation and cordyceps and there is much more.

How about the minimal fibrosis,? How to get treatment!

@estellar.367

2 ай бұрын

looka diferent doctor also reserach about longevity, and scenecence to fing extra help. there are also people gitting help with cold laser terapy. see fibrosis forums research aou al what food kan help help her, look for trcotienols, glutation and cordyceps and there is much more.

I was wishing for the DRUG-free therapies.....HOLISTIC approach with functional-integrative medicine....I disagree taking Steroids & such....Therefore Dr. your approach conflicts w/my goals. Thank you. but. NO, Thank you!

@lisacruz9579

9 ай бұрын

I take OFEV .?? Nintedamine? And serrapeptase enzymes.

@lisacruz9579

9 ай бұрын

Also keep exercising your lungs. My doctor is sending me to pulmonary rehab and also I walk on a treadmill for 3o minutes a day 6 days a week Most of all believe God is healing us!! In Jesus name amen.

I was a smoker but stopped 45 years ago and never resumed. Now I have PF with Emphysema. Could my smoking be responsible?

@denise1234530

6 ай бұрын

There is a cure

@Maria-ov8wf

6 ай бұрын

Pls what is the answer. Thanks​@@denise1234530

@Grateful_Grannie

5 ай бұрын

@@denise1234530 What is it?

@maryalicegarza4949

5 ай бұрын

What is the cure? There isn't one

Hi Sir, My wife has been suffering from a cough for the last 2+ years. We have consulted the pulmonologist. He has done CT, ANA, Ig other tests and doctor advised for daily walk, breathing exercises, forcart 100 inhaler. It's been one year but still she has a cough and 10 days back new CT is done the diagnosis is still infection(fibrosis) is there in lungs it's not reduced and also not increased. So we consulted another doctor almost all investigations are done now planning for bronchoscopy. Will do it once her lung capacity is good for the test. ****Note: My question is my wife lost her brother (@19 age) because of lung issues. Looks like similar issues she has. Is ILD are hereditary or genetic dis order. (My Wife is my mother's brother's daughter and wife's father is married to his sister's daughter) ?? Sir please reply to my question ❓

@2003iamkhushi

9 ай бұрын

If all the above test are normal and only CT scan says it’s ILD then it may be gentic, I lost my brother in Oct 2019 he was diagnosed in May 2019 with ILD NSIP, he was 31, now I also got diagnosed with ILD NSIP in Jul 2023, the difference is mine is at very starting phase and not much damage yet , I m taking treatment from Dr Randeep Guleria in Medanta, I have been advice MMF s 1080 mg and 20 mg of steroids also Mucinac thrice in a day, I do breathing exercise also, I don’t cough yet , during activities my oxygen goes down to 89 to 92 and in resting it’s 98 to 99, i m not yet facing much difficulties most probably coz I m strong still.

@2003iamkhushi

9 ай бұрын

I personally say don’t go for bronchoscopy my brother condition was worsen after that , because he has pneumothorax after biopsy his right lung was collapsed and since then he become weak I would say just follow normal medication oxygen therapy and breathing exercise bas yahi help karega to live as long as possible

@amitrathod1232

9 ай бұрын

@@2003iamkhushi Thank you for your concern on bronchoscopy. The doctor is not sure about the cause of the cough so planning for bronchoscopy. I have 5 doctors in my family they are also not sure for the cause so going with pulmonologist advices.

@2003iamkhushi

9 ай бұрын

@@amitrathod1232 yes please pulmonologist advice should be in priority.

@amitrathod1232

9 ай бұрын

@@2003iamkhushi The Biopsy report is out. It's very sad for me The report says fibrosis is an ILD PPFE same as her younger brother. They are saying it will not be cured but can be controlled with steroids and it may have side effects. Only god knows how long she will be withz us. But I am trying to get medicine which can help her for a better life with Ayurveda or anything else

I’ve been taking anti-inflammatory infusions meds Orenzio and methotrexate Been on several of these types of meds over the years I was diagnosed in 2008 And still swinging I know it’s for RA but it stopped the inflammation Decreased the the effects of fibrosis May not help everyone but ppl with inflammation it works

What is difference between lung scar and lung band

@tsangtam627

8 ай бұрын

Both are same

@tsangtam627

8 ай бұрын

Both are same

@tsangtam627

8 ай бұрын

Both are same

Stem cell therapy is the best answer nowadays for Rich People

@deepakchourasia7333

6 ай бұрын

Do u see any patients got improvement post stem cell therapy?

my case the fibrosis is on the right lung.

@estellar.367

2 ай бұрын

looka diferent doctor also reserach about longevity, and scenecence to fing extra help. there are also people gitting help with cold laser terapy. see fibrosis forums research aou al what food kan help help her, look for trcotienols, glutation and cordyceps and there is much more.

After carrying a CT scan, the results are suggesting she has pulmonary fibrosis. Don't what to do next

@estellar.367

2 ай бұрын

looka diferent doctor also reserach about longevity, and scenecence to fing extra help. there are also people gitting help with cold laser terapy. see fibrosis forums research aou al what food kan help help her, look for trcotienols, glutation and cordyceps and there is much more.

If the cause or causes of an illness aren't understood, why not say so ? Why invent a fancy name for this situation ie. Idiopathic? Obviously, every disease has a cause. There could be so many reasons. So,why has idiopathetic pulmonary fibrosis got a definitive pattern on a ct scan ? Or, is this simply an error of judgement?

@richardmarcott4343

3 ай бұрын

Idiopathic is a general medical term for cause unknown

Mine was do to Covid

@estellar.367

2 ай бұрын

looka diferent doctor also reserach about longevity, and scenecence to fing extra help. there are also people gitting help with cold laser terapy. see fibrosis forums research aou al what food kan help help her, look for trcotienols, glutation and cordyceps and there is much more.

@krystalhernandez4692

2 ай бұрын

@@estellar.367I’m getting stem cells next month

@mohdmohsin9369

15 күн бұрын

​@@krystalhernandez4692 do share how effective stem cell therapy is.