1. < Lung Health

Pulmonary fibrosis with UIP: How do they predict progression?

Posted by jimis65 @jimis65, Feb 24, 2023

I have been diagnosed with pulmonary fibrosis with UIP whatever that means, my one big question is Why do dr say 2 to 3 years after diagnosis to live? What information tells them this? What age group and level of the disease are they using? Other than two 30 minutes walks I do everyday that's it
And why do I see my dr in 6 months?

Interested in more discussions like this? Go to the Lung Health Support Group.

maryecox | @maryecox | Mar 6, 2023
In reply to @jimis65 "Good morning Everyone So being my own advocate I texted my lung Dr and asked if..." + (show)
@jimis65

Good morning Everyone

So being my own advocate I texted my lung Dr and asked if she had gotten my CT scans and if she read them. Her MA wrote back and said they had not gotten the scans yet and would request them today, I instead called the imaging dept spoke with the person who sends the images and she has never had any requests at all so I gave my dr info and guess what? They got them I am not a happy camper
Jim

Jump to this post

Jim, you need a new pulmonologist, one that specializes in your issues.

REPLY
jimis65 | @jimis65 | Mar 6, 2023

Hi Mary
I congratulate you great work!!! I do everything I can on my own how did your dr diagnose what you have? Did he/she do a biopsy? Or what?

Keep going mary!!!

Jim

REPLY
1 reply
maryecox | @maryecox | Mar 7, 2023
In reply to @jimis65 "Hi Mary I congratulate you great work!!! I do everything I can on my own how..." + (show)
@jimis65

Hi Mary
I congratulate you great work!!! I do everything I can on my own how did your dr diagnose what you have? Did he/she do a biopsy? Or what?

Keep going mary!!!

Jim

Jump to this post

My complaint in August 2020 was that when I took a deep breath that I had minor pain in my lungs. My primary care doctor ordered a lung scan immediately which showed inflammation in my lungs. She then referred me to a great pulmonologist who diagnosed ILD the next month. He put me on steroids for a while, then discontinued the steroids and prescribed cellcept. I still take cellcept -- 500 mg twice a day. I feel great with no symptoms at all. My PFTs are normal. A very good pulmonologist is the key.

REPLY
1 reply
jimis65 | @jimis65 | Mar 7, 2023
In reply to @maryecox "My complaint in August 2020 was that when I took a deep breath that I had..." + (show)
@maryecox

My complaint in August 2020 was that when I took a deep breath that I had minor pain in my lungs. My primary care doctor ordered a lung scan immediately which showed inflammation in my lungs. She then referred me to a great pulmonologist who diagnosed ILD the next month. He put me on steroids for a while, then discontinued the steroids and prescribed cellcept. I still take cellcept -- 500 mg twice a day. I feel great with no symptoms at all. My PFTs are normal. A very good pulmonologist is the key.

Jump to this post

Hi Mary
Well my lung Dr finally saw my CT scans and says I have ipf, I have on my own been walking 30 minutes everyday I do oxygen test and lung capacity tests twice a day I am not waiting on anyone to tell me what I need to do.
Jim

REPLY
View MoreView Less
Please sign in or register to post a reply.