Pulmary fibrosis

[Seay611]

Well everyone I'm confused as usual. I thought I had copd but with this two weeks no medicine is helping. It still hurts with every breath I'm tired all the time. I'm very short of breath. I'm going for a cat scan on my lungs Monday morning now the doctors are talking of pulmary fibrosis that scares me and confused please any information on this illness I've tried to research on the internet not sure where to go from here. Any information and any others with this would be greatful. Thank you !

[BillBruce]

There are several different lung problems and fortunately IPF is one of the rarer ones - I read somewhere that it affects only about 10 in 100,000.

The result of the cat scan should give the doctors a better idea of what it really is

I have had IPF for nearly 2 years but the main symptoms have been fatigue and increasing breathlessness. I hope that this helps you and good luck with the scan.

Bill

[Salmo]

Seems a bit early to suspect PF if you have not had a CT scan yet. Even after a scan many doctors can still require additional tests (biopsies) to confirm the diagnosis. Perhaps best to wait for the scan and confirmation before worrying too much especially as there are many forms of PF and some are not as bad as IPF in terms of life expectancy.

If you do want more info then the following sites and information may help.

The PF news site - lots of useful info and also has the following very good patients guide to PF.

pulmonaryfibrosisnews.com/2...

The Inspire site (US based) has a lot of people with PF and other ILDs and lots of info relevant to US. This is link to an article that should get you to the site. Some excellent links and abbreviations

inspire.com/groups/living-w...

In US (and UK) it seems really important to get referrred to a specialist centre at an early stage

[Seay611 in reply to Salmo]

Thank you so much !! I will do that !!!

[Salmo in reply to Seay611]

Good luck with the test - if you have had this for years then and they do think its PF ask about being referred to a centre that specialises in this type of disease - usually called ILD centres of excellence in the US. Everyone who has PF (or other ILDs) swears by them and the quality of treatment you get is infinitly better than you will get from consultants or centre who do not specialise in these diseases.

[katieoxo60]

Good luck on Monday, no matter what the problem it needs investigating & a proper diagnosis so correct treatment can be given. Best Wishes

[Seay611 in reply to katieoxo60]

Thank you so much. It really helps talking to everyone. I'm sorry for worrying so much. I really don't want to complain I just have been so sick with what ever lung problem I have for 2 years and so many things are going on with me I do not have a lot of answers it so scary. One day I'm feeling on top of the world then the next day I'm so sick and it does not go away. I'm so glad I have people now to talk to. I hope you have a blessed day !🌸

[Catfinger77 in reply to Seay611]

Good luck Monday.

[katieoxo60 in reply to Seay611]

Good morning Seay611, well the big day is drawing near hope some things become clearer in the next few weeks. Will be thinking of you tomorrow as I go about my chores.

[Seay611 in reply to katieoxo60]

I'm sorry it's been awhile since I've replied back I've been very sick with a lung infection But great news I do not have pf Thank God. All the cat scan showed besides stomach issues is blockage in my lungs which showed copd. I have been very sick with a lung infection not sure if this was the reason but one of the inhalers I was on can cause lung infections this is so confusing but today I feel good 😍 I have a wonderful strong woman who is my step mother but I love her like a mother She is so strong so brave but very sick with very bad lung issues she is 81 years of age and will never tell you she feels bad. I told her about you guys and how wonderful it has been. I'm not good with technology and can not tell her how I found you guys or,how I stated emailing every one. Can you please tell me? Thank you and I hope you have a great day. And do you have the phone number you can call for help advice line ?