Starting on Prednisone - I am not sure

Has anyone been diagnosed with pulmonary fibrosis?
I have and the diagnosis is scary, including no known cure and 2-5 year life span.
I need some help.
Diane

Hi Diane,

Was your diagnosis Idiopathic PF or do you know the cause? My husband has pulmonary fibrosis in the bottom third of his lungs from having COVID pneumonia a year ago. As I understand it, the healing process from the damage (inflammation) the Covid did results in fibrosis. He still has inflammation in the middle of both lungs, but the pulmonologist cannot say if that inflammation will turn into scarring. I asked for him to be prescribed anti-fibrotics, but the doctor said that is only approved for Idiopathic PF.

My husband only has 34% lung function and is on continuous oxygen (3-5 L) to keep his saturation above 90%. We have basically been at a standstill for a year. He is not better, but he is not worse. They do not know what is causing the inflammation. They cannot do a bronchoscopy or lung biopsy because of his high oxygen needs, and he cannot be sedated. He is scheduled to be in a clinical trial for a new drug for PF starting in July. However, if his scarring shows no progression, he may not participate.

I am so sorry you have this diagnosis. Don't give up as they are finding new treatments all the time. From what I have read IPF can stabilize for a while. As well, you may be a good candidate for a lung transplant, depending on your age and any other comorbidities.

I am so sorry both of you are going through this. Make sure that you/your husband gets up and walks as much as possible. I was on O2 level 5 at all times and would often dip down to 30s when walking more than 5 feet. My resting O2 level was 80% (if laying down for at least an hour, couldn't get that high if sitting). When you stop moving you are able to do less and less. So keep moving. Get up and get your own glass of water or meal or whatever. If you can get up every hour, do it. 🙂

Hi Diane
I am sorry for your diagnosis, I was just told I have pulmonary fibrosis with possible UIP, I have given 8 vials of blood to do something, since far nothing is jumping up, my dr said to walk for 30 mins everyday and she will see me in 6 months, what makes me mad is I feel underwhelmed by lack of support it's like dead man walking, the dr didn't even have my CT SCAN to review but keep your head up do breathing exercises and take alot of walks
Take care
Jim

Thanks for all your help. My Dr told me the diagnosis but in such an offhanded way that it might have been fibromyalgia! You can imagine my surprise when I looked it up on the internet that night!!
Thank you for responding and I wish us ALL swell!
@christian8

I have pulmonary fibrosis from Covid Dec 2021. I have been on a transplant list for double lung for 3 weeks now. It is scary but the transplant gives me hope. I don’t look at just statistics, more so how I’m feeling. Trust your body, it tells you everything. Tell the doctors exactly what you feel, leave nothing out. They test you from head to toe for a transplant if you get sick enough.