Pulmonary Fibrosis - Calcification of the Arteries - Raynaulds Disease - Atrial Fibrillation

[Walk2424]

Pulmonary Fibrosis is a newly diagnosed problem for my Health. Unfortunately, I only know of people that have died from it and nothing much else. Can anyone help me with suggestions on what might be the future treatments be, as I do not see my GP until tomorrow and Consultant on Thursday 28 February 2023. It has been suggested that I see a Cardiologist Consultant in the future as well for my other problems. I have to add that at the moment outwardly I do not feel extremely unwell, but am feeling that I cannot do things at my normal pace and have to slow down very much. There are no local groups here in Livingston for support but I plan to urge our local hospital to start one. Any help and advice will be appreciated. Yours Aye Kenny - Kenneth Mackay Reid

[Karenanne61]

Hi and welcome to this friendly, funny and informative forum. Don't know much about pf but I'm sure other members will be along to offer help and support.

[Walk2424 in reply to Karenanne61]

Thanks Karen.

[Patk1]

Hello and welcome to the forum.x

[Walk2424 in reply to Patk1]

Thanks.

[Currygirl]

Hi I'm also new to this forum and just been diagnosed with pulmonary fibrosis x

[Haggisgirl]

I have pf. Diagnosed end of 2019 ,I'm under brompton they are fantastic .

[AngieB72]

I have PF caused by Mixed Connective Tissue Disease - I was diagnosed in 2008 and had symptoms 3 years previous to that.

[Walk2424 in reply to AngieB72]

Thank you for your reply I hope you are getting on okay. I just found out about mine this year. Speak soon again keep in touch please.

[Izb1]

Hi Walk2424 anx welcome to the site. Dont have any experience of PF so cant advise but am sure others will be along shortly x

[Alberta56]

Best wishes. I hope that your medics will be able to give you helpful advice.

[Seaberg]

Hi Walk2424. I seem to have missed you first post. Welcome to the forum and to folk who are well equipped to help with so many health issues (some of which I do not know about or understand). You may well have heard from others but just to let you know I was diagnosed with pulmonary fibrosis in 2017 and have been having regular treatment at Guys Hospital London. So far mainly medication steroids, micophenalate, nintedanib. which I had to stop as it made me ill!

I am now doing a rehabilitation course - cannot believe I almost enjoy sessions on a cross trainer, treadmill etc. This has improved my stamina and breathing at 82 ! Have discovered PF may be familial as my mother, an aunt and two cousins suffered with it. Still I am lucky as I am mobile, don't yet have to use oxygen (except in the gym) and there is a great source here to find people who support each other.

Best of luck and good wishes