Interstitial Lung Disease Info
Interstitial Lung Disease Info
THE ILD EDUCATION PROJECT
Answering questions and comments about pulmonary fibrosis and related conditions, summaries of important research, news and other posts. Working to build awareness about the fascinating field of interstitial lung diseases, for better treatment and hopefully prevention.
🌐 There is also a website: interstitiallungdisease.info/
🎧 You can take the ILD info away! Audio versions of most videos available as a podcast:
open.spotify.com/show/4NHgvZw1pAyIMZXlKFWE4N?si=8f84378699824eb1
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⚠️ This channel does not provide medical advice for your specific case, just general medical information. Please see your own healthcare team if you are unwell or suffering from a medical condition.
Most videos should be easy to follow by a general audience (with no prior medical training), although some may be more technical.
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My father was Not able to get diagnosed til 48 hrs. BEFORE his death.
Oh wow I JUST found your channel. Subscribed and watched a few already and will dive in more. My husband, a lifetime smoker, and has fed on ant acids all his life for heartburn, well… Last Nov they found Esophageal cancer. (lower part.) Thankfully treatment was successful, no cancer anymore. And he had quit smoking last Sept. Now the doctors prescribed high strength ant acids… meanwhile only in the past year I learned ANT acids are the polar opposite of what you should do. I said start taking apple cider vinegar. Good advice but bad timing. Between the treatment and the cancer, that gave him a bleeding ulcer. So ok, back on the ant acids. Meanwhile now he has emphysema and fibrosis (lower part of his lungs.) He’s always had the smokers cough, but it’s worse now, and the phlem he hacks up is much thicker and slimier. He gets winded just walking to the mail box. Though he is doing better, gotta do more the doctor said today. Anyway his doctor first said because of the cancer he is NOT a candidate for lung transplant. TRANSPLANT? First line of defense is replace an organ? Right there I lost trust. Then he prescribed something called ofev. Not only expensive BUT the list of side effects, include liver damage, kidney damage, etc etc etc. Insurance will pay for it but neither of his think this is a great idea. Today we saw his cancer doctor, and HE explained to me that since he’s been on ant acids for so long, that his stomach lining may not be tough enough to hand normal stomach acid levels. Your thoughts? (Trust me, I know you cannot diagnose anyone this way, I won’t hold any online doctor accountable. Just looking for info to go to our doctors with. Only asking your opinion in general based on a tiny bit of info here.) We meet with his gastro doctor in a few months. Side note, I have learned a TON from doctors such as yourself on youtube. THANK YOU! I have already taken myself off an array of drugs for type 2 diabetes, BP, yea. ALL gave me side effects. Dr. Eric Berg on youtube is where I learned about the keto diet and started that just over a year ago. Lost weight, got my energy back, NO MORE damn drugs! A1c started at 10, down to 7 only two weeks into the diet change. 5 the last time I had it checked. So I know the diet works. And why I got in this shape to begin with. (Seriously our diet in this country is shit. And that is being nice.)
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!!!
thanks for this information... try Kankasav and Vasaka capsules by planet Ayurveda which are very effective in the management of Pulmonary fibrosis.
Greeting how do i vope with Shallow Breathing
Thank you, Dr., as a South African citizen age 74 yrs old. i have been diagnosed with Pulmonary fibrosis idiopathic i cannot use any Shower gel with any smell wht do you recommend.
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.
Audio on this video is very low, I had to turn up the volume all the way and still barely audible.
My wife took nintedanib (Ofev) for about 8 months but discontinued due to severe side effects, primarily diarrhea and nausea.
Actually I think she took Ofev for about a year. It seemed like the side effects were getting worse before she finally stopped taking it.
I appreciate these videos very much. I was just diagnosed 3 weeks ago. Bless you!
Hi, thank you for this! In 2021, I was in ICU for 35 days from delta covid. That strain was the hardest on the lungs. Oxygen for 7 months. Recently diagnosed with PF, with issues on the upper lobes. This lead to sensitivity blood work resulting in very high levels of 5 fungus/molds. Biopsy scheduled soon. Replacing HVAV system soon & have been using allergy meds for quite sometime. Grew up with 2 parents for 18 years of second hand smoke. Mother & grandfather died from lung cancer. Genetics in play for sure. All other blood work is fantastic which I attribute to good eating & nutrients. Of course, the mental strain is huge since covid my body is not the same😢. I have a strong will & very diversified business background but have t worked in over 2 years. Need to find out if my lungs have fungus so I can quickly be treated. Unsure about the 2 anti-fibrotic meds… ad side effects. Question is, has anyone tried nebulizing with L-Glutathione for helping cellular activity in the lungs? Dr Jockers in GA has this product. I’m holding off until I get the biopsy & the results. There has been a clinical trial on this. I’m an advocate for functional medicine & take many things to build up the immune system. Thx for your thoughts!
My facebook is filled choc-a-bloc with your videos - so inspiring and informative. You have got a servant's heart - kind and gentle.
Hello doctor my wife has fibrotic nsip and has in the last 2 months been in hospital twice fist time she received oxygen for her breathlessness for a week then was sent home, the second time they gave large dose of steroids and oxygen and this time was sent home with oxygen at home and a portable oxygen for when going out, she is on oxygen all the time and needs it otherwise her oxygen level drops and has been taking steroids for about 6months. They suspect worsening nsip but when I ask them will my wife die from this disease they just tell me we can treat it, the oxygen nurse just said don’t believe what you read on google, google says some people with fibrotic nsip die 5 years after diagnosis some live longer. My wife used to smoke so I assume this may have caused the nsip. My question: can my wife be treated and actually not need oxygen therapy and can this disease go into remission basically can she get better.
I am 46 years old and was just diagnosed with IPF. My mother had it, as well as other health issues, and passeed away at the age of 41. I got 5 years up on her... This has been quite the shock to my system, needless to say. I have alwaays haddd issues with mental health and this has just blasted me. i am seeing a therapist about that, but where I am living makes it difficult to get any help as to what and where I need to go, where to turn to get treatment for my IPF. Your videos have been very helpful in what I can ask the doctors and where I can turn. Thank you, God bless.
Do you think prednisone would be ok during chemo for gastric adenocarcinoma? My father is 85y/o, and after his last chemo treatment, his breathing became significantly worse. He gets winded after walking for 5 minutes.
Perfume is my worst enemy, as well as nicotine on people's clothes. I am now reacting to shampoos cat hair. There is in get out, I have to stay indoors most of the time.
Hi sir i need help please how can I contact you
Thank you for this excellent advice. I will listen to this regularly.
Thanks Doctor.This video is very encouraging.
I suffer from violent coughing episodes upon exertion and at night. I become breathless during conversations of two or more sentences. I take prednisone (10 mg) does not really help with the coughing but the breathing is better. Great to hear of other means to control coughing and will discuss these options on my visit with ILD specialist and pulmonologist. Very informative video. Trying to get oxygen now also.
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.
Hello dr. What do you think of taking the medication pirefidone or called sentient? I could not take Ofev was to many side effect s … but so far so good on the Enbrient. But I was on prednisone for many years for my Rhuematoid arthritis been off it for a while an u hav to be weened off the prednisone
Thank you for all the much needed infomation.
Thank you for this video! I hope you can make a video about Post COVID-19 Interstitial Lung Disease (PC-ILD). It would really help a lot of COVID survivors.
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.
Thank you very much. That was an excellent presentation. It couldn't have been clearer.
Rituxin for ipf
thank you. the video gives a confidence to accept the reality and move.
Please make vedio how to improve arterial blood gas thanks
My Dr is treating me with both MMF & Nintedanib for hypersensitivity pnumonitis, since with Nintedanib there was still progression. Is it ok. They's many a time where my stomach is affected. Though my condition was diagnosed early, no treatment was started for 2yrs. And finally when Nintenadib was started it was only 100mg twice... Any suggestions Dr, because i still feel very unwell
Same here i have bouts of nausea feel really bad for days my hypersensitivity originated from silica dust
I am Usha Mehta. I am suffering wit pulmonary fibrosis since October 2023 . I’m still getting up and down Struggling with daily leaving, I’m looking for some exercise and get done with my life thank you
Hi I have amyloidosis in my heart, lungs, gastro and skin, also mm all under control with Dara and immunotherapy, I continue to be in poor shape eg sob when walking up stairs, they aren’t too many specialist here, Adelaide Australia, thanks
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.
That's terrific news. I would be interested in knowing the name of the hospital and how much your three week treatment cost.
Pls do share the details of the hospital
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?
Thank you for your encouragement. God Bless you!
God bless you for informing us, patients, that have IPF, CHF, COPD, ect. My blood gas is 34% carbon dioxide. My oxygen is Level 6, 24 hours a day. I am currently on a ventilator now for 8 hours a night. Exertion of any kind makes my O2 levels fall down to 75-78% and now five years into IPF, recoup time is taking longer for oxygen to come back up to 90%. Thank you again and yes, I know my time on earth is limited.
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Thank you very much sir
Excellent! You hit the nail on the head! Thank you. Your videos are always great.
Very very helpful from South Africa 75yrs old female with copd thank you so very much 🎉
I was diagnosed this 3 days a go. Learning so much on the healing journey
Why are you shocked that low oxygen causes Brain Damage? Its a known fact that we need Oxygen to live. Without we die in Minutes. I would say its Essential to life amd by far the most important thing we need to sustain life. If a Person cant breathe they are desd in Minutes. If the heart stops they can do CPR amd get it going again. If lungs collapse or close off the Person is Done in minutes. The Brain requires more energy than any other organ in the Human body...The Brain is The Mother Board and we all need to take better care of ourselves. My Dad uas Severe Pulmonary Fibrosis and he gets Brain Fog often. Common Sense told me he has Brain Fog frim low Oxygen. You dont jeed to he a genius to figure oit that one. Its common knowledge that we die without Air in minutes. When it dips down to 85 on a regular basis we have issues. Not good. My Dadnwas told ue has 1-5 years to live. I was told ue uas Months to one years. We are fighting Pulmonary Fibrosis the hest we xan but i know we need to do more.
What is the cure of it ? Immunosuppressant and steroids??😊
Yep mind over matter there's no such thing as just one more.
ipf ild life expentancy
We just found out my husband has scarred lungs He has worked as a stone mason for 30 plus yrs He was in the hospital for one week with pneumonia Came home and was in bed for a month and a half It is so hard for me and my girls 😢
Has anyone here tried Zinc + NAD+ + Resveratrol? Pls watch Dr Paul Noble's videos and articles on the use of it and why we should try...
Thank you so much doc now I understand the meaning of residual fibrosis...my mind is at ease
I’m a 63 y.o. female,it took me 3 mo. to get in to see a Pulmonologist. He diagnosed me with Non-Specific Interstitial Lung Disease after he saw my CT’s (Pending more testing). He said I had scarring on both lungs, worse on the right one & a spot on my right lung, that has gotten predominantly larger, from 2019 to 2023 on CT. He’s not sure what it is for sure yet. He said it could be from an Auto Immune Disease, infection or inflammation, but he doesn’t think it’s cancer, although there’s always that chance. So he ordered a high resolution, CT and a lung biopsy. (robotic bronchoscopy-under general anesthesia). I agreed, because I have an older sister, who is 74, & scared to death of Drs and has only been to the Dr once in her entire life!! That is the honest truth. She has even worse symptoms than I have, the severe shortness of breath, the coughing, wheezing and I’m sure she has lung disease. But of course she’s too afraid of going to the doctor. I’m afraid for her and sometimes I’m angry with her, because I just can’t understand what she believes so horrible ,will happen, if she goes to see a Dr? This is way beyond white coat syndrome, or even a phobia. Our mother had severe pulmonary fibrosis and pulmonary hypertension. She lost a lot of weight and was about 85 pounds, when she died. She had lost most of her muscle mass and was just wasting away. We suspected that she had lung cancer at the end. She did live to be 78 y.o. She had 3 brothers & 6 sisters and all of them died from different types of cancer. One of her brothers died from lung cancer. So, if she had lung cancer or any other cancer, she didn’t want to know, she refused anymore tests, afraid of what they would show. All we knew is that she did have pulmonary fibrosis and pulmonary hypertension, she saw a pulmonologist and she had heart disease and saw a cardiologist. I’m working hard to get her medical records, because my Dr wants to know her exact diagnosis and what her pulmonologist was saying about her lungs and what was going on, so he can know more what to look for in mine. I’m so sorry this is so long, but I believe it contains a very important message for people to know. I know it’s very scary when you’re sick and you don’t know exactly what’s wrong with you. I’ve been there, more than once. I believe it’s very important to go through the tests and to be diagnosed, first of all so you can, received the appropriate treatment and hopefully begin to get better. Just as importantly, so that your children and family, will know exactly what you are diagnosed with, so that they can be checked for the same disease and be vigilant in the future, to know what to look for in themselves and even their children. Because some things do run in families. I just feel like it’s selfish to not find out what is medically wrong with you, so that your children and your family will know, in order to help them avoid the same pain and suffering, that you went through. I don’t blame my mother, because I don’t think she ever thought of it this way. I think she was just so full of fear over the word Cancer did it just completely consumed her. So I understand and I don’t blame her. It’s been 18 years since she died, and her medical records are probably nonexistent by now, but I’m still searching and hopefully I will find something. I truly hope this helps somebody out there & that you don’t have to go through what my family is experiencing, all due to FEAR of the MEDICALLY UNKNOWN. Whatever the test shows, you can face it head on, along with your God, your Family, your Kids & your Friends🩵🩷 And let’s not forget, the support from your doctors & Nurses. God Bless & Well Wishes to All 🙏✝️
Thank you so much for your advice🙂
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