@agullotti, getting a new diagnosis like IPF can be a shock. Here's more information from Mayo Clinic http://mayocl.in/2jAEmAi I'm glad you found Connect to ask questions of people who are living well with IPF. What's your biggest concern?
There is a series of tests that need to be done to confirm the diagnosis. I was recently told I have IPF even though the original CT Scan shows fibrosis in my lungs it doesn't necessarily mean I have IPF I am waiting for my blood work and a HRCT scan to confirm. I show some symptoms but not others So be sure to do what needs to be done to be sure
I have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem
Very like myself, my heart dr said my heart was fine but they saw something on my c scan and a pulmologist came in a said I has IPF. The first thing is you need to have more tests to see exactly what is what. Scaring in the lungs can be caused by many different things and with different outcomes
I have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem
I am 67 and I have had 2 open heart surgeries and 2 lung taps .just could not get back to my strenght after the last open heart so I ask my doctor and thats when he told me about the pulmonary fibrosis.I will see a pulmogist soon .just wanted to know about this condiction
I have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem
Hello out there! A week ago I had a chest X-ray by my new doctor because I had a positive TB skin test. No TB but they found a scar on my lungs - IPF - idiopathic pulmonary fibrosis. Of course I googled all the information I could to find out more about this disease and what I've learned is devastating and unbelievable. No cure, no medication, 3 to 5 years after diagnosis? This had turned my world upside down and I'm looking for support from those who also have this disease. I have had several bouts of bronchitis and pneumonia in the past 2 or 3 years, don't smoke nor live with people who smoke, live in Honolulu, Hawaii. I am a 66 yr old new grandmother and desperate to live longer to enjoy my new role as Nana.
hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.
hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.
Thank you for your reply. It's the first and only positive thing I've heard since my diagnosis. It gives me hope which is what I'm searching for right now. I've gone through the shock and denial phase and now acceptance. My daughters are still in shock and panic and I haven't had a chance to talk to my son as he's been away on his honeymoon for the past two weeks returning tomorrow. What an awful thing to come home to.
Connect
Connect
Like
Helpful
Hug
@loisblo why did you have to give up golf? What activities keep you busy now?
I was just told I have pulmonary fibrosis.need to know more about this .please help
There is a series of tests that need to be done to confirm the diagnosis. I was recently told I have IPF even though the original CT Scan shows fibrosis in my lungs it doesn't necessarily mean I have IPF I am waiting for my blood work and a HRCT scan to confirm. I show some symptoms but not others So be sure to do what needs to be done to be sure
-
Like -
Helpful -
Hug
1 ReactionI have only had chest ct scan from my heart doctor and he said I had it and need to see another doctor .waiting for that.I knew I had a bad heart did not know I had a bad heart but never heard of this problem
Very like myself, my heart dr said my heart was fine but they saw something on my c scan and a pulmologist came in a said I has IPF. The first thing is you need to have more tests to see exactly what is what. Scaring in the lungs can be caused by many different things and with different outcomes
I am 67 and I have had 2 open heart surgeries and 2 lung taps .just could not get back to my strenght after the last open heart so I ask my doctor and thats when he told me about the pulmonary fibrosis.I will see a pulmogist soon .just wanted to know about this condiction
I just turned 60 with no real health issues except stress from work sent me to the hospital
Hello out there! A week ago I had a chest X-ray by my new doctor because I had a positive TB skin test. No TB but they found a scar on my lungs - IPF - idiopathic pulmonary fibrosis. Of course I googled all the information I could to find out more about this disease and what I've learned is devastating and unbelievable. No cure, no medication, 3 to 5 years after diagnosis? This had turned my world upside down and I'm looking for support from those who also have this disease. I have had several bouts of bronchitis and pneumonia in the past 2 or 3 years, don't smoke nor live with people who smoke, live in Honolulu, Hawaii. I am a 66 yr old new grandmother and desperate to live longer to enjoy my new role as Nana.
hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.
Thank you for your reply. It's the first and only positive thing I've heard since my diagnosis. It gives me hope which is what I'm searching for right now. I've gone through the shock and denial phase and now acceptance. My daughters are still in shock and panic and I haven't had a chance to talk to my son as he's been away on his honeymoon for the past two weeks returning tomorrow. What an awful thing to come home to.
-
Like -
Helpful -
Hug
1 Reaction