I was diagnosed via Ct scan done in 2018 because an X-ray looking for pneumonia found fibrosis of both lungs. I was in shock and then referred to pulmonologist who said I had to stop smoking and needed a lung biopsy on the operating table and I said “ no thanks. I have no symptoms of sob or cough. Then I went to UW interstitial lung clinic to… Read more

I had my cataracts removed with no problems. I have now issues with my retina with appointment tomorrow. I have ankylosis spondylitis which can cause problem with retina. I am now noticing a weird change in eye site. Get a second opinion!

I am on no meds for PF but on plenty for my ankylosis spondylitis! I am not on oxygen and am not short of breath but I will tell you I have gained 40 lbs since being diagnosed with this. I sm in constant pain in my back and now neck as my bones fuse. I finally have talked my Psych nurse pracctioner and she has started me on Metforin. I will… Read more

No

I may have said this before but I was diagnosed in 2018. It is now 2023 and still no cough or SOB. I researched myself and take zinc and a chinese herb Teavigo on Amazon, red light therapy but don’t have the IV. I refinanced my house to put in a swim spa because I have another disease that currently is worse, called ankylosis spondylitis where… Read more

I was diagnosed 4 years ago due to Md thinking I had pneumonia . One doctor gave me 5 years. It’s not true cuz I have no symptoms.!!! Changed doctors and still no symptoms. Open up to self healing! Meditate daily. I am having more blowing tests but after changing pulmonologist he said there is no way I can tell how long! Don’t believe the crap… Read more

I was diagnosed with interstitial lung disease in 2018 and they did a endoscopy and found out that I had acid reflux as well. I have I have been put on oprazalam and doing fine. I have had acid reflux many times over my 69 years. Don’t think it caused the fibrosis.

I just bought one on Amazon. Going to start using it. No need for prescription!

I wish my father was alive today he lived 97 and was a fabulous and famous thoracic surgeon who did the first open-heart surgery on the West Coast. He traveled all over the world teaching people how to do heart surgery and at one point he and his team could’ve done it liver long and heart transplant all at once but he didn’t want to play God… Read more

Me too! I have changed to third pulmonologist cuz the first two said I had max of 5 years and I felt like a s specimen! No lung transplants for me. I am 69 and really am not afraid of dying!

Thank you all!

Being a mental health therapist myself in private practice now for 15 years and 42 years as a psych nurse and a licensed mental health counselor I feel that anyone whatever age with a chronic illness or debilitating illness needs to live as they say in the moment. When I was first diagnosed in 2018 with interstitial lung disease or what they… Read more

I would frankly ignore it! I was found to have pulmonary fibrosis Amin 2018 and still have no symptoms but my lungs are fibroid and have all the stuff. I changed doctors 3 times and my new Md is fabulous. My breathing scores have improved and are normal as of Wednesday! He old me to live my life! Am not on any of those meds. Find another… Read more

I can’t believe that there is not a pulmonologist following your husband. I don’t live in England what is the US but I was diagnosed in 2018 and still don’t have any symptoms like shortness of breath or cough or loss of weight. They initially did an x-ray thinking I had pneumonia but found that there was other things in my lungs and that’s when… Read more

I have had a lung biopsy through my traechea where they took samples. Doctor still cant decide if I have IPF or UIP. I have no symtoms yet like cough or shortness of breath. I have ankylosis spondilitis, and fibromialgy. I had the test that goes through your nose and diagnoses GERD which I have. He still wants me to have a VAT? lung biopsy… Read more

I will! Good for you!!

I just finished reading a lot I love PF patients Like myself and I’ve had similar experiences with different pulmonologists!I was diagnosed with all the fibrosis in 2018 after having a chest x-ray to see if I had pneumonia after I had two bouts. with bronchitis. The first one wanted me to have a long biopsy on the operating table which I did not… Read more

I had bronchitis  in 2018 and doctor ordered X-ray looking for pneumonia. Instead my chest was abnormal and had cat scan which showed both Owen lungs fibroid and ground glass and opacities. Then I had pulmonary blowing tests and were a little less than normal. No one told me it was a fatal illness. Then they said come back in a year. Did… Read more