What more can you do to treat pulmonary fibrosis (if already on medication)?
ฝัง
- เผยแพร่เมื่อ 25 ส.ค. 2023
- What more can you do if you have pulmonary fibrosis or an interstitial lung disease? In this video I make some suggestions that cover lifestyle changes, healthy living, mental health, symptomatic treatments, research etc.
The suggestions start at 03:44 (after my intro and context).
I discuss the following topics:
1. Stopping smoking
2. Avoiding indoor pollution (inside your home)
3. Good quality sleep and how to improve sleep
4. Reducing acid reflux
5. Increasing exercise while giving the body time to recover
6. Overcoming personal challenges can be a good thing
7. Relationships and support
8. Community involvement, sharing your knowledge and getting involved in meaningful projects
9. Getting involved in research
10. Oxygen treatment if required
I also share some suggestions as they relate to my personal life.
#pulmonaryfibrosis
Please leave a comment below if you want me to cover other topics in ILD.
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The opinions presented on this channel are my own and do not constitute medical advice in specific cases. If you are watching/listening to this content as a patient, you must seek personalized advice from your own healthcare team (who can provide you with a consultation and appropriate treatment and advice. This information presented here may not apply in your case. If you are a health professional, please use your professional judgement when treating patients.
Thank you, I’m 73 and have just learned this is my life/ death now. Just need to accept what is. Thank you for your info and time you have spent with your videos. I’m sad, can’t believe this is my life now. Thank you.
May God bless
I was diagnosed on Monday, 3 days ago. Thank you for all your support, time and efforts you put into this video. Positivity in my mind, I believe is a huge Catalyst to survival. This young man of 63 years thanks you again for sharing all your thoughts and experience. Keeping the Faith!
My facebook is filled choc-a-bloc with your videos - so inspiring and informative. You have got a servant's heart - kind and gentle.
I have recently been diagnosed with Interstitial lung disease and since I didn't know what it was I was calm about it, but when the reality of the seriousness of the disease step in I started to feel despair.
Just wanted to say thank you for taking the time to make these videos they are very informative and educational and has brought alot of comfort to me.
I was diagnosed this 3 days a go. Learning so much on the healing journey
You are a beautiful person. Carry-on. Sometimes who you are brings more health than what you say. Thank you.
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.
thank you. the video gives a confidence to accept the reality and move.
I quit smoking in 1979 and never smoked again. Now I have , end stage, PF and Emphysema. I had been a heavy smoker. I'm experimenting with Metformin although not a diabetic as it has shown to reduce fibrosis in mice. I'm also reducing caffeine and eliminating alcohol whilst living on a keto diet . I'm 80 (in October). Not ready to quit as yet but, in reality, totally buggered! Even using the toilet means that I have to rest for twenty minutes thereafter with a Spo2 slowly coming back from 72%. I'm on continuous O2. Stopping coffee helps me reduce ectopic arrythmia but its a high price to pay!!! Keep posting these really encouraging talks, please.
Dr Stefan, thank you for the video. Sorry for the long comment.
I am from north of Pakistan and my father (76 years) was diagnosed with pulmory fibrosis last year in March. He has been on medication since then. Unfortunately, we still couldn't figure out the leading cause of this disease, but still, he is doing really good. Our city's elevation is 2300m above sea level, which makes this disease a little more complicated. He has to use an O2 concentrator in my town (Skardu), but he does not have to use any concentrator in Islamabad. He usually walks and does exercise every morning and sometimes in the late afternoon as well. He had been using essential cough syrups since the beginning, but the cough was not going away, so he decreased the usage, improving his cough. He mainly does his own household work, which makes him happier and more robust.
I was diagnosed 1 year ago. At 77 I have started to do puzzles. So nothing is impossible. Thank you for this video very helpful.
I really appreciate these videos! It is so helpful!
Thank you so much. Such a good advice. May God bless you and use you more
Very helpful timeless information for a recent diagnosed person.
Thank you for these videos!
I have seen many doctors and have had many interactions with people in the medical industry. You are very intelligent and give very good information. I can tell you are calculated and you care. Keep these videos coming! 👍
Looking forward to watching more of your videos! You made my day! Thanks!
Thank you so much for this information, really enjoying your videos.
Thank you very helpful!
I have appts. with my Pulmonologist and a vascular surgeon today. Friday I was at the ER - purple lips, x-ray showed hypoventilation. ECG- tachy bradychardia-44-154 heart rate, I was diagnosed with PF 2 years ago. I am 55. I thank you ever so much for this information. I like your presentation, authenticity, and obvious compassion and knowledge. I look forward to watching ALL of these. Absolutely the lift I needed prior to my appointments.
O
Your message about finding purpose is so very important. Thank you.
Excellent doctor, Many blessings
This one is very important part of the disease process. Love his encouragement . ❤❤❤❤
So much I didnt know, Thank you for not letting me feel alone
Good video. Very informative and useful
Thank you so much, your advice and talks are always so helpful and encouraging. Your understanding and care mean so much!
Brilliant advice! One tip l've tried, when l go swimming, l asked permission to take my oxygen tank and leave it at the side of the pool for when l get breathless. It really helps and stops me panicking.
Thanks once again for helping us manage our problems with a good attitude
Thank you for this excellent advice. I will listen to this regularly.
Thank you so much ❤
Very helpful!
Thanks Doctor.This video is very encouraging.
Thankyou so much your videos r very helpful good job sir👍
Wow Doctor thankyou so much for the most amazing , encouraging, informative vidio.
Having just received news that my brother has been diagnosed with IPF ...I have been struggeling to know how to encourage him but having found this vidio, I really believe you have put everything in a nutshell & it is great that it would be comeing straight from a m/o & not from a know.. it ..all sister!
I can trully feel your compassion & dedication comeing through in this channel. Your patients are very privallaged to have you as their physician!
Much blessings from South Africa 🇿🇦
Thanks for your message, all the best to your brother!
Thank you so much for all your beautiful & helpful suggestions. Unfortunately I not only have IPD, but also have fibromyalgia, osteoarthritis & effects from having a Nissan Fundoplication like spasm of oesophgus. I am 77 & tend to want to just ‘give up’ as I can no longer give to the community as I used to do. I am always tired & in pain. I’m definitely going to try & follow your ‘healthy sleep pattern’ advice. Thank you so much & God bless you!
Rats not wraps
A few things I'll be adding to my regimen are Tocotrienol, Air Physio & Mullein❤Thank u for the great advice
Thank you so much for this video, I have 9 grandchildren half of them do sports, I try to make it to one sports event per week, that has truly helped lift my spirits. Pulmonary fibrosis was never a part of my plan, I have to find new normals, which can be challenging my mind says I don't have limitations however my body says otherwise. I'm super thankful for still being on this planet and for this channel.
Best wishes to you positive woman 💚💙💚💙
Thank you so much for this video. I am IPF patient since 2018. Beside prescribed medicines , exercises, breathing exercises, pranayam and balloon Blowing helps a lot. My overall health is stable.
glad to hear, best of luck to you!
What is your prescribed medication if you don't mind?
Thank you doctor. It is really excellent advice for the patient. Very direct and beneficial, I would like to have some insights on the type of exercise we can do
thanks for posting diagnosed about a year ago had severe rhumatoid arthritis that scared my lungs almost 69 years old videos like yours keep me from giving up.
Thanks for your message, it encourages me to keep creating this type of content! All the best to you!
Since covid I got this pain in my upper back never had it. I have sleep apnea they said it scaring in the lung I wake up with pain as I move it goes away but when I wake up it's there. So annoying and frustrating I stopped smoking ty probably the best video I came across
It amazing , helpful video!!!Dr . God bless you🌹🌹♥️
i'm very happy it was helpful, god bless!
It’s very useful advices I have diagnose PFB LAST WEEK I am on soma madication
Thank you Doctor, I discovered your channel a couple of months ago , I find all of your information very helpful. Twelve months ago I was diagnosed with IPF , and it's been a bit of a battle, I struggle to find the right questions to ask my specialist , so I leave his office sometimes more confused about my diagnosis . Thank you.
Viktorya 🇦🇺
it's very common for this to happen unfortunately, because there is a lot of info to discuss during consultations. I personally also struggle sometimes with the limited time allocated to each patient (that I cannot control). But do keep asking questions and seeking clarification. I wish you all the best!
Thanks ❤
I am also having this disease..your words help alot..I am 44 years old got this disease in 38
Your channel is very helpful! My husband was diagnosed with IPF last month. You are a compassionate doctor. Thank you for all the information that you share. We will be at the PFF Summit in November and hope to learn more and develop some new relationships.
How is he now
Please, what is the PFF Summit?
TY for asking . He has been on OFEV 6 months , and it has been stopping the progression of tissue damage .
The PFF - Pulmonary Fibrosis Summit is sponsored by the Pulmonary Fibrosis Foundation. It is an educational conference for leaders in the field , patients, caregivers, transplant recipients etc…. Look into the Pulmonary Fibrosis Foundation in the USA. God be with you and your loved ones 💙💚💙💚 @janeceest
@@lorismith5369 Thank you, and may God be with you as well.
hello dr,thank you for all your work.keep going
what about Zn , what about complementary medicine like serropeptase,curcumine ,when antifibrotic inhaler ?
congratulations
Thank you sir but please make video on acid reflux
Hello from NZ, have just found your channel. My 82 yo father has IPF and is currently struggling due to his first chest infection. Apparently the antibiotics worked but have noticed his food/fluid intake has dramatically dropped, I think he has reflux and am going to try Gaviscon to help? Have been in touch with his GP & specialist but still waiting reply. Last specialist appointment three months ago he was stable but i have noticed a considerable deterioration, hoping he can get his food intake/energy up slightly but I know it’s not looking great ☹️
❤
Hi. I was asked if i had a rash. ! Can you elaborate on this please.
Such a small thing. But I did have one on the left handside of my face.. under my eye. A dry patch.. but it went with a touch of moisturiser !
I would be grateful for some explanation.
Your talks are amazing. Much regard. Bet
I have the same dry red patch under one eye that won’t go away since the last year. I’d like to know how to get it healed for good
Excellent presentation with many helpful ideas. The only thing I'd add (apart from to endorse the comments about diet, exercise and social connections) is to check if pulmonary fibrosis is in your family genes. If it might be, encourage every family member over 50 to get a CT scan to see if they have the disease. (Simple XRays may not show early fibrosis.) I would not be able to maintain my very active lifestyle if I had symptoms. Fortunately, I was diagnosed two years ago, at an early stage in my pulmonary fibrosis.
My wife was recently diagnosed with ipf, but, the dr found that she was using macrobid since late 2016, when all her lung problems began. She stoped the medication 6 months ago, as it was per pulmonologist dr recommended, she still asymptomatic, she had a lft within sage 1 pf . Is it possible that pf gradual less progression can be achieve. Thank for the possible answer.
Is there any truth to Zinc helping IPF?
Look at Cordyceps (mushrooms).
I don't hear PT suggested, which my FP ordered for me. I was told 2 years ago I have this on an incidental finding with a kidney CT scan. Now, a new FP doctor doesn't care either.
I read about zinc ... How good zinc is in stopping PF? i mean he has a good role in being anti inflammatary metal..
Great suggestions doctor..I incorporate almost all of your suggestions into my daily life..
I honestly believe I have been treating my condition inadvertently by my lifestyle especially my intense exercise routine.. I think it opens up genetic pathways that have an inflammation reducing
Effect.. i notice that after an exercise session i have a greatly reduced irratation in my lungs and almost no coughing for 24 to 36 hrs .it may even help in the development of scar tissue in the lungs.
unfortunately I think it's still hard to define exactly from a scientific perspective how exercise alters the fibrotic pathways. This would be a great topic for research however
Nice video..
Good information and advice
I am working as medical consultant and it will help me and my patients
Great video...I'm a 74 yr IPF patient for 10 months and I appreciate the encouragement, we all need it😊
Are you saying metformin can cause pulmonary fibrosis???? at the end of your talk.
no we cannot say that a specific drug will cause lung fibrosis at this stage , can't make that blanket statement - I have just published another video about how we make the diagnosis of drug-induced pulmonary fibrosis
What about sex
Legalise euthanasia and voluntary assisted death…would make life much better for many. Eating well, sleeping well etc isn’t going to materially alter disease progression, unfortunately that’s a fact. Once you have it, you have it….
I agree it’s important to have choices in how we die. Peace and acceptance is not enough.
4 or 5 grams of magic mushrooms and you will quit smoking that day.