Making Friends close to home

[ShebaAlfie]

I’m hoping to get to know some new friends who can chat about pulmonary fibrosis and how to deal with it’s challenges

[barneysbull]

Hi ShebaAlfie and welcome to the site. I know you will find the help you need here, but, unfortunately, pulmonary fibrosis is not my forte. I am sure that someone will soon connect, they're good like that. 👍👍 Take care.

[joyce74]

That's lovely Cas you obviously know each other so well , best buddies. You are both so lucky to have each other ❤️Xx

[AngieB72]

Hi

I have PF. I was first diagnosed with Mixed Connective Tissue Disease 10 years ago which has caused the PF. If I can answer any questions for you I will give it ago.

[ShebaAlfie in reply to AngieB72]

Hi and thank you for your reply. I was told I had an autoimmune disease which my body attaked my lungs then after 8 years they said I didn’t but I had a slow progression of fibrosis? Confused??

[AngieB72 in reply to ShebaAlfie]

So what have they said you have got now and the cause of it if it’s not this autoimmune thing?

[ShebaAlfie in reply to AngieB72]

They said it’s fibrosis but not Idopathic but cause unknown, I said that the same thing and they said the cells from s biopsy showed it wasn’t! I hate it when I can’t breath sometimes and feel life is so limited and then it eased and not quite as bad, so up and down emotionally and no one who understands to speak to. My husband sympathies but then it makes me sad to see him feeling sorry for me ! Ugh!!!

[Piperava]

Hi ShebaAlfie, my husband has IPF he was diagnosed in 2015. He was previously told it was COPD but after numerous chest infections his GP decided to sent him for a CT scan which resulted in being told it was IPF. Obviously I am not the one suffering the actual disease but if I can help in any way please ask. Take care and look after yourself.

[ShebaAlfie in reply to Piperava]

Hi and thanks for getting in touch. I was told I don’t have IPF as the biopsy didn’t show honeycombs but I do have progressive fibrosis which is very slow. I worry that I can’t do what I used to and feel lonely and anxious about it and find it occupies my mind far too much, am I normal! I had untreated chest infections which were never sorted for a couple of years and then I figured it out and have a treatment plan which since discovering this have got a lot better,