Thank you so much folks. That was really helpful and beneficial to me as a pulmonary fibrosis patient since 2010. Thank you again and God bless you all
I was Dx today at VA Hospital with lung scarring. They did not say much except took blood and come back in two months. Gave me Arbiturol inhaler. It's really scaring me that I'm terminally ill and will die early. Don't know where to turn.
I was also just diagnosed with ILD stage 4 but found out my pulmonologist uses a different numbering system than cancer. Stage 4 is in remission not like cancer. I couldn’t believe it when I read the office notes because my mom just died from cancer. I’ve been seeing doctors for many years and have had many images taken of my chest and no one said anything. I also have ankylosing spondylitis, and sarcoidosis. Seems like in the last few years I’ve had really bad cough’s that would last for a week or two,I think that’s what causes the scaring. They put me on symbacort it seems to help. I always wondered if the sarcoidosis came from the Navy.
Hi TJ, My brother goes to a VA hospital in the midwest. The environment there seems supportive as guys ask each other about their service. He also goes to a Mayo Clinic. It's 5 hours for him to drive and about 3 for me so we drive together. He's been diagnosed with IPF for 7 years. He probably had it a few years before diagnosis with cough and other things that local doctors couldn't determine in the early stages. It is a scary disease and not one you hear about much. I'm sure he struggles more than I know. Sometimes the communication between VA and Mayo is frustrating. But as far as having support for IPF, I'm not sure he gets what he needs. Rural areas are forgotten areas for health care. He takes several meds and oxygen only at night for now. His cough is relentless and the hardest for me to hear him struggle.
Of course they know about it, but there is no cure, just 2 drugs that can slow the progression down. Are the side effects worth it though, that's what I am trying to decide on!
I am having bronchitis and I am 18 years old and from past 1 week my breathing issues is not decreasing even after taking medicines do I have the risk of this disease
My father had this problem but his cardiologist didn't do anything about it. Mainstream doctors are no longer the people to go to. My father passed away from improper care. He had it for years but the uneducated doctors didn't do anything about it. Mainstream medicine and its doctors are are only a dillusion. The problem must be researched online by lay people before they go to their doctors, because doctors don't follow through w/ what needs to be done. This upsets me to the point that I don't trust doctors to be in the "know". My father died. NO thanks to his cardiologist and local hospitals as well as the V.A. in Erie,PA. Had I known all this I would have taken him to the Cleveland Clinic w/ my computer tablet in my hand.😠😠😠. Doctors need to be FUNCTIONAL not hurried on to the next patient because they don't have the time to be thorough.😠 My father died and I blame his NON functional doctors for it.👿👿👿👿
Sadly, there is no cure, all you can do is slow the disease down. I was diagnosed in March 2022, and I have now got my first appointment with a specialist in March 2024, 2 years later.
@@nicolecozier3379 I don't feel too bad at the moment, and I have just been told they are going to put me on OFEV, so I hope it slows the disease down!
Thank you so much folks. That was really helpful and beneficial to me as a pulmonary fibrosis patient since 2010. Thank you again and God bless you all
I was Dx today at VA Hospital with lung scarring. They did not say much except took blood and come back in two months. Gave me Arbiturol inhaler. It's really scaring me that I'm terminally ill and will die early. Don't know where to turn.
I was also just diagnosed with ILD stage 4 but found out my pulmonologist uses a different numbering system than cancer. Stage 4 is in remission not like cancer. I couldn’t believe it when I read the office notes because my mom just died from cancer. I’ve been seeing doctors for many years and have had many images taken of my chest and no one said anything. I also have ankylosing spondylitis, and sarcoidosis. Seems like in the last few years I’ve had really bad cough’s that would last for a week or two,I think that’s what causes the scaring. They put me on symbacort it seems to help. I always wondered if the sarcoidosis came from the Navy.
@@bluesdirt6555 I also have ankylosing spondylitis and was just diagnosed with ILD. Prayers for you brother.
Hi TJ, My brother goes to a VA hospital in the midwest. The environment there seems supportive as guys ask each other about their service. He also goes to a Mayo Clinic. It's 5 hours for him to drive and about 3 for me so we drive together. He's been diagnosed with IPF for 7 years. He probably had it a few years before diagnosis with cough and other things that local doctors couldn't determine in the early stages. It is a scary disease and not one you hear about much. I'm sure he struggles more than I know. Sometimes the communication between VA and Mayo is frustrating. But as far as having support for IPF, I'm not sure he gets what he needs. Rural areas are forgotten areas for health care. He takes several meds and oxygen only at night for now. His cough is relentless and the hardest for me to hear him struggle.
I NEVER HEARD OF INTERSTITIAL LUNG DISEASE. WHY don't doctors talk about it ? Do doctors even KNOW about it ????😡😡 cause I didn't.😠😠😡😡
Of course they know about it, but there is no cure, just 2 drugs that can slow the progression down. Are the side effects worth it though, that's what I am trying to decide on!
Yes. We know about it. COPD, Asthma and Heart Failure is more common. ILD is less common and therefore less heard of in the public space.
I am having bronchitis and I am 18 years old and from past 1 week my breathing issues is not decreasing even after taking medicines do I have the risk of this disease
More like you have acute bronchitis from a viral infection. Chronic bronchitis is a form of COPD but COPD is not ILD.
My father had this problem but his cardiologist didn't do anything about it. Mainstream doctors are no longer the people to go to. My father passed away from improper care. He had it for years but the uneducated doctors didn't do anything about it. Mainstream medicine and its doctors are are only a dillusion. The problem must be researched online by lay people before they go to their doctors, because doctors don't follow through w/ what needs to be done. This upsets me to the point that I don't trust doctors to be in the "know". My father died. NO thanks to his cardiologist and local hospitals as well as the V.A. in Erie,PA. Had I known all this I would have taken him to the Cleveland Clinic w/ my computer tablet in my hand.😠😠😠. Doctors need to be FUNCTIONAL not hurried on to the next patient because they don't have the time to be thorough.😠 My father died and I blame his NON functional doctors for it.👿👿👿👿
Sadly, there is no cure, all you can do is slow the disease down. I was diagnosed in March 2022, and I have now got my first appointment with a specialist in March 2024, 2 years later.
@@polaris7122how do you cope
@@nicolecozier3379 I don't feel too bad at the moment, and I have just been told they are going to put me on OFEV, so I hope it slows the disease down!