Very informative....thanks for taking the time to post Because of my age (74), I have very limited options, but it is nice to know they are available for "youngsters" :) Positive attitude seems to work well to not falling into self pity. :) Wishing all inflicted with any lung disease to enjoy each day...
Hey Nanci. I to am a senior, age 76. I have limited options but an trudging the road to happy destiny. Keep your chin up. I am sending prayers your way. Mike
@@MikeBentonTV Sr. I'm a 70 y.o .guy and diagnosed with the disease in 2015,,,, it has done progress but i'm not on meds. or oxigen yet i hope i can go long ways like this since lung transplant just brings more suffering,,,,, How is yours now?
I’m not going to complain ever again about a headache or bad belly! I have no reason to gripe over some trivial inconvenience . Thank you for persevering and for your service in uniform! May our LORD heal all who have this disease. 🙏❤️🇨🇱
New to the channel....I know what your going through with your breathing …..I was a smoker and also was born with asthma...I thought it was a good idea to start vaping in 2015 to stop smoking and I just woke up one morning and had to go to the E.R was never right since.….I'm on around 8 meds just to feel a little better and doesn't help very much ….Still my Doctor wont do much testing....he just keeps trying different things that's not really helping but now I'm about to the point I got to try something else....I'm starting to think its copd but a little scared to find out and I hardly ever feel like doing anything at all as far as getting around and doing anything that I use to like to do...it truly sucks!! . ….you got a new subscriber!!
God bless you, and praying you find peace in your life. My daughter has ILD, it's C.O.P. and her Dr is working with her, but she has a lot of pain in her chest from coughing so much. Thank you so much for sharing your story. Once again, GOD BLESS YOU!
Megan. I have been diagnosed with Interstitial Lung Disease (ILD) and am waiting to see my "new Dr." on April 9, 2019. Thank you for this video, it has helped me in many ways. It probably does not surprise you that I am having a little (or a lot) anxiety with all of this. I am going to keep listening to what you have to say. You are inspirational and a realist. Thank you for your information. Please see that I receive your videos. Your new fan! Mike
You're so intelligent, even more so because you're able to speak in layman's terms! Thank you for sharing your life and all the information, from the patients one of view. I suffer from mental illness and I'm thrilled that you are working on yours Masters and I hope you can prescribe medicine soon, to help people. The greatest party of your work is diminishing the stigma, so thank you for that! Have a good day, an easy day, with no suffering.
Megan, I had so many questions about this disease. I am first timer here today. I haven't seen a Dr. yet, so I don't know what to expect. Thank you for answering questions, they are very helpful.
Hi Megan, thank-you for your videos!! I am especially thankful as you are the first person with anything close to what I have that I have seen on You-Tube. Your descriptions are spot-on in terms of your disease and its treatment. I am sorry if this is going to be a very long comment--feel free to not read it--life is short. I am different in that I had severe asthma and very frequent pneumonias, and pancreatitis growing up. I was initially diagnosed with CF due to the fact I have abnormal sweat tests; Outside of getting intubated several times a year and pneumonias, I did well. I surfed nearly daily, ran - 15-20 miles most nights, and then started cycling when I screwed up my knees. I first went on O2 at 19, I rehabbed myself an got off it after 2 yrs. I eventually went to med school, graduated, did residency and started work. Still had the same old problems with one twist-- genetic testing showed I have no known CF genes. Some still think I am a CF morph. But I have fibrosis, bronchiectasis, bronchiolectasis, pulmonary nodules all over my lungs and large calcified masses at the bases of my lungs, ground-glass opacities and sheets of ground glass in my left lung as well as massive lymphadenopathy throughout my lungs. Lung biopsies yield no agreement other than I have fibrosis and that my lungs were colonized with various bacteria. No one knows what to call it, other than I have severe persistent asthma, pulmonary fibrosis, and bronchiectasis-- I have taken to calling PFLD--pretty fucked up lung disease I did pretty well until about 8 yrs ago when I was leaving on my usual sat 100 mi bike ride when I started getting hypoxic a mile out with no grade. I ended up hospitalized with klebsiella pna in all lobes and from that day forth I have been on 02. I just got the G-5 but when I walk even on level 6 my sats fall to the low 60's after a few blocks and HR to 170's-- I may have outgrown my brand-new fully paid for by myself G-5 ( my insurance company thinks being able to work and exercise is a luxury), I take about 40-60 of prednisone-- trying to get that down with mycophenolate 2 gm, similar nebs except I use 7% saline and mucomyst, albuterol inhaler, Spiriva mist, Alvesco inhaler, The VEST and of course O2 1-4 not moving, a failing 6 when walking. Anyway, I am very grateful for you sharing your story and your life--it is rare to find anyone else w/o IPF or CF that has ILD out there and who is TRYING to have a LIFE that is more than your prognosis. Gawd its a struggle, but I would literally die if I have no purpose for my existence and had to stay home everyday. I LOVE my job-- I work at the VA ( you may have mixed feelings about that) and my patients truly inspire me to at least try my hardest to get to work and I truly love them, Thanks Dev
Dev, Thank you for the comment and the reply. I read the entire post and as you stated, yes life is short. I know that a lot of people, especially us in the veteran community have mixed feelings when it comes to the VA hospitals, but there are diamonds in the rough, and there are people that care. I have been fortunate to find all of them at most of the VA hospitals that I have been to aside from the one in Washington DC :P (that was sarcasm, there are awesome people there too). I am sorry that you are going through a similar situation and it does suck the life out of you/us but I am glad to see that you are pushing through. Keep moving forward and I am happy to continue to move forward with you. Best wishes for continued health and Hopefully a stable- or as stable as we can be- outlook.
Great info, I am recently diagnosed but losing ground already and need all the info I can get. If I could make a suggestion, the background music gets pretty loud and all I really need is to hear you speak. Thanks for the site.
Thank you for the feedback. And I am sorry for the loud music. I am hard of hearing so it is hard for me sometimes to know how loud the music actually is. However, I am glad that the information has helped you a lot. If there are any questions that you have or there is more information that you are looking to get about this disease, please feel free to send a message at any of my socials or here on RUclips and I will write back. Happy Holidays. 💜
The metals and sand was...pretty cool 😂. I wanted to see my lung lavage fluid too! Especially under the microscope. That stuff is very interesting to me. Mine is mostly various white blood cells ("The Doozers" constantly fixing things like they do in Fraggle Rock), old blood, sloughing tissue. I take Creon on and off to help with my pancreas insufficiency, mine's not related to my lung disease though, it comes in flares.
Thank you for shedding light on this awful illness we have. I do take the cellcept and it has kept me from having flares for 3 years now. As always many hugs n prayers.
I have tthe same as you have and had same things done to me.I have also had Ards and survived. My lungs just stopped working and i was put on life support for 7 days and in hospital for 35 days.I am trying to hang on every day. xo
Just looking back from when I first saw you you have inspired so many I look forward to all of videos I thankyou for always taking the time to do tutorials they are so helpful you also look awesome in 2019 your loved by so many thankyou for all you do💜
You're not alone. My ILD is caused by Rheumatoid Disease. I was diagnosed in 2015 and in my research I have only found one person who's had this longer than 5 years. I am not a candidate for transplant because like you, I'm "too healthy", and since my ILD is caused by RA, it is most probably that it would affect new lungs too.
There are people who get lung transplants with autoimmune diseases like RA and Lupus. They'll suppress your immune system down to make you less likely to attack your new lungs. It is kind of trading one illness for another with a transplant, as they're constantly trying to stop rejection post transplant, but it buys people more time. Good luck 😊
Hi! sorry but I accidently deleted all my tube tube friends. I just found you again, This time I wrote it down if I do this again, thanks for all the info you give! xo
I find your video very helpful I was just dig. With ILD but I have heart disease copd and diabetes on top of it now I get to have all the other test to determine what type I have. I have been fighting doctors for over 2 years to find out what was wrong they got me a power chair to get around but no oxygen yet
Rob Jarrett best of luck getting an exact answer on your ILD. It sucks when we ha e to fight doctors for answers but once we have them, we can finally move forward.
Rob... are you on any treatment? There are only 11 centers in the country that specialize in ILD. I hope that you are in contact with them... there are drugs now that can help.
You did a great job answering all the questions. Are you still experiencing any residual pain from the open lung biopsy, and do you think it changed your treatment any? Didn't your Dr. already diagnose the bronchiolitis from the results of the PFT and HRCT? My Dr wants me to have lung biopsy, but I am hesitant, and I asked him if it would change anything or if it was just a confirmation of his diagnosis. I admire your positive attitude.
Carol thank you for the positive words. Yes the HRCT and PFT were diagnostic in nature but the biopsy is the only thing to definitively prove the disease. It doesn't actually change the treatment but help increase the propensity to get different treatment. Also, chronic pain is an issue for me and pain management helps.
I know this is an old comment, and I hope you are doing well. In case curious others are reading, my lung biopsy was done via bronchoscope, much like an endoscopy but down a different hole. I was asleep with propofol, and they also did a bronchi-alveolar lavage (not sure I spelled that right) I usually call it lung wash or lung lavage to simplify, but they wash each lung out with saline and then examine the fluid they extracted at the lab. It was not as invasive as her lung biopsy sounds, not sure why doctors do one way or the other. I have had endoscopies for my GERD, and this was a little more intense, but probably more from the lavage than the biopsy. Mainly, I had a very sore throat when I woke up, and had a lot to cough up for 2 or 3 days after the procedure. Every case is different, I have had pneumonia left over from Covid-19 for a year, and when I woke up a lot of my pneumonia pain was gone, and I could take deeper breaths. It's temporary relief though, my body is attacking my lungs in my case. Just saying, there is more than one way to do the biopsy, and I have no regrets.
In many cases, it does. It is also progressive and usually requires a lung transplant in the future. In my case, both of my lungs are affected and have fibrosis. I have progression by at the moment, it has slowed down. The issue is that it can change and get worse at any time according to my doctors. Hope that this helps. ☺️
HI!! I was adminestered oxigen at the E.R but wouldn't help me ,,,i was gasping for air so bad for 24 hours,,,,,, this hapenns like once very 2 months but usually goes away in 2 hours,,, but las time it lasted as i said 24 hours and always happens in the middle of the night,,,,,im so scared when the next time will be ,,,,,,, 😢
Sorry that you had to go through that experience. I understand what it is like not being able to breathe and when it takes so long to get your breath back, the fear of the next episode makes it tough. But I am sure that you will be strong through it because you survived the first couple already 💜
I had a Lung biopsy because I was short a breath upon exertion. I felt numb on the side of the biopsy for a year. After a year, I had pinching in that area for years. I asked my Pulmonary Dr and was told that’s a side effect that can’t be reversed. I was diagnosed with BOOP/COP. Because there is no cure and the disease hasn’t been tested, my Pulmonary Dr classified my disease now as ILD. After many blood test, I was told I have other underlying illnesses. I have Raynoids, Lupus, and RA. With that said, I am now diagnosed with an Autoimmune Disease aka MTCD. I am taking Pulmonary Rehab now. I am on SSDI and do some small jobs to get me out of the house and supplement my income. I do have a channel, please check me out. New subscriber 😍
Very informative....thanks for taking the time to post Because of my age (74), I have very limited options, but it is nice to know they are available for "youngsters" :) Positive attitude seems to work well to not falling into self pity. :) Wishing all inflicted with any lung disease to enjoy each day...
Hey Nanci. I to am a senior, age 76. I have limited options but an trudging the road to happy destiny. Keep your chin up. I am sending prayers your way. Mike
@@MikeBentonTV Sr. I'm a 70 y.o .guy and diagnosed with the disease in 2015,,,, it has done progress but i'm not on meds. or oxigen yet i hope i can go long ways like this since lung transplant just brings more suffering,,,,, How is yours now?
I’m not going to complain ever again about a headache or bad belly! I have no reason to gripe over some trivial inconvenience . Thank you for persevering and for your service in uniform! May our LORD heal all who have this disease. 🙏❤️🇨🇱
Megan you are so inspirational. Keep up the good work.
Megan keep up in being positive . It will help to continue to improve. I was diagnosed with pulmonary fibrosis (IPF) in 2022. So far I am doing well🙏
New to the channel....I know what your going through with your breathing …..I was a smoker and also was born with asthma...I thought it was a good idea to start vaping in 2015 to stop smoking and I just woke up one morning and had to go to the E.R was never right since.….I'm on around 8 meds just to feel a little better and doesn't help very much ….Still my Doctor wont do much testing....he just keeps trying different things that's not really helping but now I'm about to the point I got to try something else....I'm starting to think its copd but a little scared to find out and I hardly ever feel like doing anything at all as far as getting around and doing anything that I use to like to do...it truly sucks!! . ….you got a new subscriber!!
God bless you, and praying you find peace in your life. My daughter has ILD, it's C.O.P. and her Dr is working with her, but she has a lot of pain in her chest from coughing so much. Thank you so much for sharing your story. Once again, GOD BLESS YOU!
Megan. I have been diagnosed with Interstitial Lung Disease (ILD) and am waiting to see my "new Dr." on April 9, 2019. Thank you for this video, it has helped me in many ways. It probably does not surprise you that I am having a little (or a lot) anxiety with all of this. I am going to keep listening to what you have to say. You are inspirational and a realist. Thank you for your information. Please see that I receive your videos. Your new fan! Mike
You're so intelligent, even more so because you're able to speak in layman's terms!
Thank you for sharing your life and all the information, from the patients one of view.
I suffer from mental illness and I'm thrilled that you are working on yours Masters and I hope you can prescribe medicine soon, to help people.
The greatest party of your work is diminishing the stigma, so thank you for that!
Have a good day, an easy day, with no suffering.
Megan, I had so many questions about this disease. I am first timer here today. I haven't seen a Dr. yet, so I don't know what to expect.
Thank you for answering questions, they are very helpful.
I am glad that the video was able to help you. Good luck in your journey for answers and I hope that the doctors you have are awesome.
Hi Megan, thank-you for your videos!! I am especially thankful as you are the first person with anything close to what I have that I have seen on You-Tube. Your descriptions are spot-on in terms of your disease and its treatment. I am sorry if this is going to be a very long comment--feel free to not read it--life is short.
I am different in that I had severe asthma and very frequent pneumonias, and pancreatitis growing up. I was initially diagnosed with CF due to the fact I have abnormal sweat tests; Outside of getting intubated several times a year and pneumonias, I did well. I surfed nearly daily, ran - 15-20 miles most nights, and then started cycling when I screwed up my knees. I first went on O2 at 19, I rehabbed myself an got off it after 2 yrs. I eventually went to med school, graduated, did residency and started work. Still had the same old problems with one twist-- genetic testing showed I have no known CF genes. Some still think I am a CF morph. But I have fibrosis, bronchiectasis, bronchiolectasis, pulmonary nodules all over my lungs and large calcified masses at the bases of my lungs, ground-glass opacities and sheets of ground glass in my left lung as well as massive lymphadenopathy throughout my lungs. Lung biopsies yield no agreement other than I have fibrosis and that my lungs were colonized with various bacteria. No one knows what to call it, other than I have severe persistent asthma, pulmonary fibrosis, and bronchiectasis-- I have taken to calling PFLD--pretty fucked up lung disease
I did pretty well until about 8 yrs ago when I was leaving on my usual sat 100 mi bike ride when I started getting hypoxic a mile out with no grade. I ended up hospitalized with klebsiella pna in all lobes and from that day forth I have been on 02. I just got the G-5 but when I walk even on level 6 my sats fall to the low 60's after a few blocks and HR to 170's-- I may have outgrown my brand-new fully paid for by myself G-5 ( my insurance company thinks being able to work and exercise is a luxury), I take about 40-60 of prednisone-- trying to get that down with mycophenolate 2 gm, similar nebs except I use 7% saline and mucomyst, albuterol inhaler, Spiriva mist, Alvesco inhaler, The VEST and of course O2 1-4 not moving, a failing 6 when walking.
Anyway, I am very grateful for you sharing your story and your life--it is rare to find anyone else w/o IPF or CF that has ILD out there and who is TRYING to have a LIFE that is more than your prognosis. Gawd its a struggle, but I would literally die if I have no purpose for my existence and had to stay home everyday. I LOVE my job-- I work at the VA ( you may have mixed feelings about that) and my patients truly inspire me to at least try my hardest to get to work and I truly love them, Thanks Dev
Dev,
Thank you for the comment and the reply. I read the entire post and as you stated, yes life is short. I know that a lot of people, especially us in the veteran community have mixed feelings when it comes to the VA hospitals, but there are diamonds in the rough, and there are people that care. I have been fortunate to find all of them at most of the VA hospitals that I have been to aside from the one in Washington DC :P (that was sarcasm, there are awesome people there too). I am sorry that you are going through a similar situation and it does suck the life out of you/us but I am glad to see that you are pushing through. Keep moving forward and I am happy to continue to move forward with you. Best wishes for continued health and Hopefully a stable- or as stable as we can be- outlook.
Great info, I am recently diagnosed but losing ground already and need all the info I can get. If I could make a suggestion, the background music gets pretty loud and all I really need is to hear you speak. Thanks for the site.
Thank you for the feedback. And I am sorry for the loud music. I am hard of hearing so it is hard for me sometimes to know how loud the music actually is. However, I am glad that the information has helped you a lot. If there are any questions that you have or there is more information that you are looking to get about this disease, please feel free to send a message at any of my socials or here on RUclips and I will write back. Happy Holidays. 💜
The metals and sand was...pretty cool 😂. I wanted to see my lung lavage fluid too! Especially under the microscope. That stuff is very interesting to me. Mine is mostly various white blood cells ("The Doozers" constantly fixing things like they do in Fraggle Rock), old blood, sloughing tissue. I take Creon on and off to help with my pancreas insufficiency, mine's not related to my lung disease though, it comes in flares.
Thank you for shedding light on this awful illness we have. I do take the cellcept and it has kept me from having flares for 3 years now. As always many hugs n prayers.
Candace Pitt thank you. And positive vibes to you too ☺️
I have tthe same as you have and had same things done to me.I have also had Ards and survived. My lungs just stopped working and i was put on life support for 7 days and in hospital for 35 days.I am trying to hang on every day. xo
Keep Fighting the good fight :)
Just looking back from when I first saw you you have inspired so many I look forward to all of videos I thankyou for always taking the time to do tutorials they are so helpful you also look awesome in 2019 your loved by so many thankyou for all you do💜
Thank you 💜 You all are my inspiration to continue making videos!!
Thank you
Very informative and awesome video. Thank you!
True Janey Sue it was my pleasure. ☺️
I’m on cellcept. Not for this disease. But I’ve had no issue with it thankfully.
You're not alone. My ILD is caused by Rheumatoid Disease. I was diagnosed in 2015 and in my research I have only found one person who's had this longer than 5 years. I am not a candidate for transplant because like you, I'm "too healthy", and since my ILD is caused by RA, it is most probably that it would affect new lungs too.
chronic Stitcher hopefully medicine can find something to assist in the future.
There are people who get lung transplants with autoimmune diseases like RA and Lupus. They'll suppress your immune system down to make you less likely to attack your new lungs. It is kind of trading one illness for another with a transplant, as they're constantly trying to stop rejection post transplant, but it buys people more time. Good luck 😊
You are the best 💜💜💜💜🙏🌺🌺
Hi! sorry but I accidently deleted all my tube tube friends. I just found you again, This time I wrote it down if I do this again, thanks for all the info you give! xo
And thanks for all the info!!
My Pleasure 💜
I find your video very helpful I was just dig. With ILD but I have heart disease copd and diabetes on top of it now I get to have all the other test to determine what type I have. I have been fighting doctors for over 2 years to find out what was wrong they got me a power chair to get around but no oxygen yet
Rob Jarrett best of luck getting an exact answer on your ILD. It sucks when we ha e to fight doctors for answers but once we have them, we can finally move forward.
Rob... are you on any treatment? There are only 11 centers in the country that specialize in ILD. I hope that you are in contact with them... there are drugs now that can help.
@@JoanMelendezteamEHR plzzz tell me from where this drugs can be found.i badly needed
You did a great job answering all the questions.
Are you still experiencing any residual pain from the open lung biopsy, and do you think it changed your treatment any?
Didn't your Dr. already diagnose the bronchiolitis from the results of the PFT and HRCT?
My Dr wants me to have lung biopsy, but I am hesitant, and I asked him if it would change anything or if it was just a confirmation of his diagnosis.
I admire your positive attitude.
Carol thank you for the positive words. Yes the HRCT and PFT were diagnostic in nature but the biopsy is the only thing to definitively prove the disease. It doesn't actually change the treatment but help increase the propensity to get different treatment. Also, chronic pain is an issue for me and pain management helps.
I know this is an old comment, and I hope you are doing well. In case curious others are reading, my lung biopsy was done via bronchoscope, much like an endoscopy but down a different hole. I was asleep with propofol, and they also did a bronchi-alveolar lavage (not sure I spelled that right) I usually call it lung wash or lung lavage to simplify, but they wash each lung out with saline and then examine the fluid they extracted at the lab. It was not as invasive as her lung biopsy sounds, not sure why doctors do one way or the other. I have had endoscopies for my GERD, and this was a little more intense, but probably more from the lavage than the biopsy. Mainly, I had a very sore throat when I woke up, and had a lot to cough up for 2 or 3 days after the procedure. Every case is different, I have had pneumonia left over from Covid-19 for a year, and when I woke up a lot of my pneumonia pain was gone, and I could take deeper breaths. It's temporary relief though, my body is attacking my lungs in my case. Just saying, there is more than one way to do the biopsy, and I have no regrets.
Thank You 🙏🏽 🌹
This 1 got hella views girlie!!!
Is it possible music turned down to level I could hear you above the LOUD music isn’t necessary
My husband's pulmonologist recommended Tai Chi for him. Also, has your doctor mentioned Embral or Remicade for you?
no but I will Have to ask :)
Does obliterans bronchiolitis damage of both lungs? 🤔 🫁
In many cases, it does. It is also progressive and usually requires a lung transplant in the future. In my case, both of my lungs are affected and have fibrosis. I have progression by at the moment, it has slowed down. The issue is that it can change and get worse at any time according to my doctors. Hope that this helps. ☺️
HI!! I was adminestered oxigen at the E.R but wouldn't help me ,,,i was gasping for air so bad for 24 hours,,,,,, this hapenns like once very 2 months but usually goes away in 2 hours,,, but las time it lasted as i said 24 hours and always happens in the middle of the night,,,,,im so scared when the next time will be ,,,,,,,
😢
Sorry that you had to go through that experience. I understand what it is like not being able to breathe and when it takes so long to get your breath back, the fear of the next episode makes it tough. But I am sure that you will be strong through it because you survived the first couple already 💜
@@OperationBreathe THANKS!! 💕
I had a Lung biopsy because I was short a breath upon exertion. I felt numb on the side of the biopsy for a year. After a year, I had pinching in that area for years. I asked my Pulmonary Dr and was told that’s a side effect that can’t be reversed.
I was diagnosed with BOOP/COP. Because there is no cure and the disease hasn’t been tested, my Pulmonary Dr classified my disease now as ILD. After many blood test, I was told I have other underlying illnesses. I have Raynoids, Lupus, and RA. With that said, I am now diagnosed with an Autoimmune Disease aka MTCD.
I am taking Pulmonary Rehab now. I am on SSDI and do some small jobs to get me out of the house and supplement my income.
I do have a channel, please check me out.
New subscriber 😍
How are you now a days?
😃