Patient Comments: Pulmonary Fibrosis - Symptoms


What were your symptoms associated with pulmonary fibrosis? Submit Your Comment

Comment from: Feoconn, 35-44 Female (Patient) Published: March 01

At the height of the COVID pandemic becoming a thing in the States around March/April of 2020, I was having a really bad lupus flare. I was diagnosed with pneumonia and bilateral effusions. I recovered but the shortness of breath never abated. My muscles stopped working and I was in pain in every joint. Then I was diagnosed with antisynthetase syndrome after lots of tests and scans. I have moderate pulmonary fibrosis now. I was 40 when I was told the news. I’m about to be 42. It’s not gotten better. Not at all.

Comment from: Dainty66 , 65-74 Female (Patient) Published: September 11

When I went to get my food handler’s card, they said my x-rays looked like I had tuberculosis (TB). This was when I was 33 years old, in 1983. I didn’t feel ill at the time. I taught in a bilingual elementary classroom for 25 years. During the last 7 years, I was injured and had to retire on January 2003. On July 24 I was admitted in the hospital with pneumonia, when the pulmonary doctor ordered a CT scan, and I was diagnosed with pulmonary fibrosis on September 3, 2019. The only symptom was pneumonia.

Comment from: Judy, 65-74 Female (Patient) Published: April 14

I had breast cancer in 1990. Maybe a couple years later smoke really started to bother me. Just walking into restaurants, I'd hold my breath just to get past the smokers standing near the door. In 2009 I had a liver transplant, and prior to that I was hospitalized 8 weeks. I had my lungs tapped several times while there and I had numerous chest x-rays and CAT scans and also a PET scan. After the transplant they took chest x-rays daily for 10 days, then twice a week and a few more before I was discharged. I started oxygen for my pulmonary fibrosis in 2002. Now it is 24/7 and up to 5 liters. Our 50th wedding anniversary is in June and my daughter is getting married in July, I plan to be there.

Comment from: Judi, 65-74 Female (Patient) Published: May 21

I am a registered nurse. I never smoked or drank. I worked at the same hospital for 47 years and just retired one year ago. My first symptoms were cough and shortness of breath. This was ongoing for 3 years. Chest x-ray only showed chronic bronchitis. Finally I went to the hospital and was diagnosed with pulmonary fibrosis. They did a 6 minute walk and my oxygen dropped to 72 the first 30 seconds. They put me on oxygen and I have it on continuous, 4 - 6 liters. That was only 6 months ago. Now I"ve gotten worse. To walk short distance it drops to 74 - 80 even with oxygen. I am on prednisone 20 mg daily. Doctor doesn"t give me much hope. He told me to call a hospice. I am not ready for that yet so I will choose to hold on to my faith and believe for healing. So sorry for all of you that are going through this too.

Comment from: Hopeful, Female (Patient) Published: December 10

I have had idiopathic pulmonary fibrosis (IPF) since 2010. I am on oxygen, 2 to 3 liters. I am fine sitting. My oxygen is 95 to 98 sitting, but it drops dramatically on standing. I go to lung rehabilitation 3 days a week.

Comment from: Rmason, 55-64 Female (Patient) Published: April 27

There is a huge number of pigeons that live in my attic. Wondering if I am in danger of any lung disease like pulmonary fibrosis. The amount of dropping is unreal. The landlord will do nothing. The noise from the birds is horrible.

Comment from: Dee, 75 or over Female (Caregiver) Published: February 10

My dad was diagnosed of pulmonary fibrosis in hospital this year, 2017. The hospital after diagnosis then discharged him saying there is no treatment needed at that stage. Dad passed away 5 days after discharge. He was walking, talking and eating till the last night and never got up from sleep. We were told cause of death being hear failure (never smoked a cigarette in his life). This was very rapid decline. I have not read or heard of such rapid decline in this condition.

Comment from: Esther Collins, 75 or over Female (Patient) Published: September 30

After months of shortness of breath following mildest exertion, i.e., walking 100 feet, I was diagnosed with pulmonary fibrosis (PF) 9/26/14. Until approximately 20 years ago, even though I'd learned that smoke bothered me, people smoked in my home. This changed when my husband was informed I would henceforth live in a smoke free environment, whether we remained together was up to him. We have now been married 65 years and he does not smoke.

Comment from: shirlmes, 65-74 Female (Patient) Published: October 08

I now have serious pulmonary fibrosis. My knees, ankles and back are just giving me so much pain.

Comment from: 45-54 Female (Patient) Published: July 29

I was hospitalized for a week 3 years ago with what they told me was COPD. It came on suddenly and by the time I arrived at the hospital I was barly able to breathe. They really didn't look any further into it and sent me home with inhalers ect.. Had several lung/broncular infections throughout the years and still didn't think much of it. In 2013 developed a cough and was having an awful time breathing. Went for a cat scan (after X-rays found scarring) a day later.


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Comment from: detroit old timer, 55-64 Male (Patient) Published: May 30

A CT scan in November of 2012 verified that I have IPF. I do respond to prednisone. When I was hospitalized in September of 2012, my blood oxygen level was 50. I was literally blue. I went thru cardio pulmonary rehab. It helped to get my activity level up again. I walk daily, using a walking chair. Being on oxygen 24-7, along with the prednisone, has made me able to walk my two dogs again. It takes much longer than before, but I get it done. You have to stay active.

Comment from: Starjama, 55-64 Female (Patient) Published: May 13

I was diagnosed in 2009. I do not know what to expect with this disease. Sometimes I am not sure if I wish to know, because I might get depressed.


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