Diagnosed with interstitial lung disease (ILD) - now what??
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- Опубліковано 7 сер 2024
- What can you do if you receive a diagnosis of an interstitial lung disease (ILD)? How can you deal with this chronic lung disease?
In this video I cover what the diagnosis can mean for you, information your doctor and healthcare team may give you, how to better understand your diagnosis and treatment options. I talk about non-medication options: oxygen therapy, exercise programs (pulmonary rehabilitation), reading about your diagnosis, support groups, finding health information online, psychological support and other relevant issues.
Interstitial lung diseases can include diagnoses such as idiopathic pulmonary fibrosis (IPF), non-specific interstitial pneumonia (NSIP), sarcoidosis and many others. Not all of these conditions behave in the same way so it is important to find the right information in your case. Whenever you do not understand your diagnosis, ask your healthcare team to clarify this so that you can make better health choices.
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Disclaimers:
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For all viewers/listeners:
The information presented here or in other videos and posts on this channel is not medical advice. These materials reflect general medical knowledge which may not apply to your individual case. If you have health concerns, please see your own doctor or other healthcare provider without delay.
For medical professionals:
You must use your professional judgement when treating your patients. The information presented in this and other videos/posts on this channel is for general medical education only. It may not apply to all patients or clinical scenarios.
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I have a separate channel to discuss issues related to interstitial lung disease (ILD) if you are interested: www.youtube.com/@InterstitialLungDisease
Wow.This is the first comprehensive video I’ve seen about ILD specifically for patients and in terms easily understood!! This should be required for everyone with ILD- if that was even possible. I’ve personally been searching for a year.
I have NSIP and was hit hard and fast. Thank you for clarifying what my doctors (whom I really like) have not been able to tell me so succinctly.
Thank You! I will help you to spread the word. This should have a million views.
Thank you. You light my way to a better life. I got ILD because of Covid and it's been really difficult because I'm on 24hour oxygen... but I'm Alive and doing what I can for others and myself. Again thank you for sharing the knowledge. 20:28
This is me also. Got ILD due to covid this past August, and I am on 24-hour continous oxygen.
Thank you Doctor, I’m having ILD from last 3 years. Still under medication. You explained the purpose of living very well.
Thankyou so much for your kind, sensible advice. I have copd and have recently taken up swimming 3 times a week. I leave my oxygen exchanger by the steps and have a breather every 2nd length. It really helps you to take deeper breaths. You are very encouraging and supportive, it is very much appreciated.
Thank you doctor for making these videos. I am a 2021 severe covid survivor, I was sedated & ventilated for a month then had a tracheostomy for some time there after. I spent 3 months in ICU, 2 weeks in a general ward, I was given an honorary send off by the medical staff, I was told that I was the only survivor out of 10 who did not make it. I then went for 3 wks to a rehabilitation hospital. In total I spent 4 months away from home. I now have lung fibrosis and iron deficiency anaemia. I do have underlying diseases such as Scleroderma, Sjogrens Syndrome, High Blood Pressure. I'm from South Africa
Hi. I also have ILD Pulmonary fibrosis now because of COVID in 2021.I was in hospital 1.5 months. I'm oxygen dependent now. Also from South Africa
@@ElsjeGeldenhuyscan we get in contact?
I'm so thankful I found your video,I was diagnosed almost 12month ago, the information you have give to me makes things so much clearer. Whenever I see my specialist I find it difficult to understand what he is telling me and I can't seem to absorb what he is telling me. Thanks again❤
Thank you Doctor . What you said about having a lot of different issues and feeling that you’re confused is so true! I’ve been at a loss for probably 10 years. I have Lupus, Sjogren’s was just diagnosed with ILD from a CAT scan, I have an aneurysm in my spleen, I’m dealing with a kidney stone right now. My weight is great, I’ve never smoked, a good attitude, but I’m totally exhausted all the time, and I’ve been having breathing problems that I thought was just due to my exhaustion from lupus. I think I’ve finally figured it out. They are all connected. Just no one helped me to understand that except for watching these couple videos of yours, so I get it now. Thank you so very much!
Hi there,
My name is Maria and I wonder if you would like to connect I have a similar background of Sjorgen and ILD. I was diagnosed with LIP in August post positive COVID event.
This is an awesome, very informative video. I'm newly diagnosed and confused and anxious about it. Dr. Stanel's advice is well received. Thank you.
From Jamaica 🇯🇲 I have been listening to all your videos thanks all lot made my life with ILD much easier
Thank you for giving a positive outlook
I am so glad I found your videos. I have been struggling mentally over my ILD since diagnosed in 2021. I was not getting much information from my pulmonologist and what I read on the Internet scared me to death. After watching your videos I am feeling much more empowered in living the life I have left with joy and hope. Please continue to provide these very important and helpful videos.
I was diagnosed in 2022, it's frightening to start with, but I have accepted it now. Started on OFEV 3 months ago, but I am having some serious side effects, told to stop them and wait until I feel better before trying again just to make sure it's definitely the tablets that are causing the problems!
Thank you Dr. Stanel for the great video !
You are such a caring person/doctor, thank you!
Thank you Dr Stefan for taking the time to make these videos explaining the different lung conditions.
I was hospitalised 16 months ago after having Covid and then pneumonia.
I was initially told I had Pulmonary Fibrosis and my world was turned upside down.
I the months after that diagnosis I have been told it could be Sarcoidosis and then more recently that it could be Hypersensitivity Pneumonitis.
I had been on a high dose of prednisolone for months, the side effects have affected just as much as the lung problems making my weight increase significantly, I've become far more irritable, restless
I had never heard of any of these conditions prior to diagnosis and each time I looked up the symptoms and prognosis I was more confused.
Your videos are helping me understand the different conditions in words I can understand which is far more than my hospital team have done so far.
Once again thank you
Thank you for the video doc.
Thank you so much. This was incredibly helpful.
Thanks Dr
It's very informative and helpful to patients
Thank you for your Videos in Pulmonary Fibrosis. My Father has Severe Progressive Pulmonary Fibrosis. I appreciate all your knowledge and thank you for sharing it with everyone.
Thank you for your video you are a compassionate Dr and that’s very hard to find
I try
This is great content, thank you!
I am doing my best to learn more about my condition and look things up, but alas, there's just not a lot of info about pulmonary alveola proteinosis out there.
Wife just got this in Arkansas , sad.......Its all new for us scary ...Think you are doing a good job explaining it. A little more at ease watching your film.
Thank you Dr. this helped me understand my ILD much better. I sincerely appreciate you
glad it was helpful! I started putting all my ILD videos on this other channel if you're interested: www.youtube.com/@InterstitialLungDisease
I have this 4 years. I just get short of breath and very tired. I will ask my doctor about your medicine. I have GERD bad but Goo weight. Good video. I do sit all the time!
Wowww Sir.U r a Super Doc.U r patients Bless U for these Vdos 😇🙏
Can you discuss stem cell therapy research that is currently ongoing. Also zinc and nad+ and resveratrol and sirt 1 enzyme supplement that is used for IF treatment. Good informative videos.
I’m newly diagnosed and got ILD after Covid. I went down the rabbit whole with IPF and really did think that it was terminal. I’ve also been diagnosed with antisynthetase and Sjögren’s syndromes. I haven’t cancelled my vacation plans because now I’m hopeful after speaking to my rheumatologist.
I m from India I got diagnose with ILD NSIP in Jul this year, my brother passed away in Oct 2019 with same disease and he was diagnosed with ILD NSIP in May 2018, during his journey we had very few information also he was very healthy hence he could not get much symptoms and when we found he had maximum scaring and in my condition I have scaring equal to none but yes I do have thickening,during activities my oxygen goes down to 89 to 93 and during resting it’s 98 to 99, I m on aggressive treatment taking MMFs 1080 mg and 20 mg of steroids, I do breathing exercise and the oxygen therapy which doctor has explained is amazing and I will do that now I m 42 years my brother passed away at the age 31 years.
Is there any pegion cages nearby your home or room.?? Up
@@princeagrahari127 hello prince no , I don’t have any birds or pigeons around me, also hypersensitive test is done and it was negative
Which stage are you suffering right now.?
@@princeagrahari127 starting phase , u have anyone with same disease ?
Yes there are many in varanasi...,, What doctors told you.??
Does it also involve that my neighbors are burning their trashes and enters my house. And the smoke can't hardly go out
Balls of steel this young lady got.I wouldn’t do it even if you’re paying me tons of money.
Thank you for your Videos regaurding Pulmonary Fibrosis. My Father has Progressive Severe Pulmonary Fibrosis. My first Question is why was he never offered a Lung Transplant? My second question is why did they wait until he almost nearly died last month from lack of oxygen to put him on the Medication. We tried the Natural route for a month. Now today he started the
Hi hi have COPD i have had since 2011 and with brochiectasis would i come under the ILD i have just got mine stable after having a chest infection i had to get a rescue pack of my doctor it took a second lot of antibiotics to clear it up that was in november last year and it as just cleared in January this year i am using a device called air physio and it does work glad i bought it so with my condition would i fit into the ILD category just asking
Dr. Thank you !! I will follow you for the the newest videos!!God Bless you!!
I'm glad the content was helpful! I also have another channel more focused on ILD - Interstitial Lung Disease Info
Can it be diagnose by MRI?
MRI will visualize large features like honeycombing or coarse fibrosis, but HRCT is the tech needed to detect fine details like reticulation and micronodules. Hence, HRCT is the gold standard for ILD imaging.