Breathless

[Dermie]

Hello I have just been told I have pulmonary fibrosis and am having tests to determine which type. I am pretty bemused as I thought the increasing breathlessness was due to my heart condition and diabetes. Any info will be gratefully received as I had not even heard of this condition.

[stilltruckin]

patient.co.uk/doctor/pulmon...

[Dermie in reply to stilltruckin]

Thanks for the link, I have just read it all. Surprised that it is such a serious disease and incurable. Oh well, at the moment life goes on ☺️

[Hidden]

Hi dermie, sorry Uve had the news uve had, sorry I can't give advice on pf , but most of us on here have incurable illnesses, manageable to a degree with medicines, healthy eating and whatever exercise U can manage will help. One of my best tonic's is the advice, support and pick me up jokes I get off here. hope we can help u too. Xx sonia xx

[Dermie in reply to Hidden]

Hello Sonia, I didn't mean medical advice as I will no doubt get that from my Doctors, I meant advice on how to deal with it, etc and support and friendship that is offered on this site. What you offer is exactly what I need. Xxx

[Offcut]

I have Restrictive Lung Disease plus a few heart and others bits to help it all along. I had a severe chest infection that put me in ICU I picked up empyema which is pus on the outside of the lungs which attacks the lungs and scars/fibrosis them. I was supposed to have had a decortication but that was deemed unsafe. and was put on a Oscillator for 12 days. Resulting in more scars on the inside.

Your other conditions may not be helping and such things as beta blockers can reduce steroid type inhalers working as well.

It may help to look at how you breath and try not to panic breath?

Be Well

[Dermie in reply to Offcut]

Hello off cut, I have had increasing breathlessness for about 3 yrs and was always told it was my heart or diabetes by my G.P. And that was okay, as the persistent dry cough was my medications. However I had a severe chesty cough in January and was sent for a CXR. As antibiotics were not helping.The hospital called me back for more, and then I saw the Consultant last week who told me the other diagnoses were wrong that I had this P.F. Which was exacerbating my other probs, rather than the other way round. Now I am having more tests, CT scan and blood tests to determine what type. I Sam pretty stoic and just get on with things. I try not to panic breath as I learned to calm my gasping ( usually with laughter). Now I just need support on a friendly rather than medical level.

[Offcut in reply to Dermie]

I have been there to even after my cardiologist sent a letter toto my GP's to say that he had concerns over my breathing and it was not to do with my heart they still insisted it was the heart. My spiro in 2012 proved them wrong.

[cofdrop-UK]

Hello Dermie, A very warm welcome to you, but sorry you have just received this diagnosis. You might want to telephone the specialist nurses at BLF for a chat - I am sure you will find them very helpful. As flibberti says please make sure you have a good respiratory consultant with a special interest in PF - you can check them out on the internet.

Hopefully a member with PF will come along soon.

cx

[butter-fly]

Hi Dermie.

You are very welcome here and there's always someone around to chat to. Likes Sonia says there always advice, support and humour to pick us up. Look forward to hear more from you.

Sara