Pulmonary fibrosis

[Babyjim]

A question for those with pulmonary fibrosis. Any out there alive for more than five years.

[Katinka46]

Hi Babyjim, I read your earlier post and the replies. You are doing well. As for answering your latest question. Hmmm.... Not sure that there will be much response, not because people are not supportive, I think you will realise that they are after your first post, but because lung diseases are so individual. And no one — no one — will feel confident about prognoses. There are too many factors, other conditions, the wildly differing ways our bodies react to things. And so people are not sure quite how to reply. Make the most of the moment and keep active and positive, you obviously are both of those.

Good luck

K x

[HuwieHex in reply to Katinka46]

I was diagnosed with IPF in November 2008. Now a lot weaker and feeling rather fragile but I do hope to celebrate my 80th birthday in July.

[O2Trees in reply to Katinka46]

Don't think Babyjim is asking for a prognosis Katinka. Just people's experience up to the present - not the same thing.

[Katinka46 in reply to O2Trees]

Yes. I realised that and nearly deleted my reply.

[Adela123 in reply to Katinka46]

I am really kinda new to IPF diagnosed Apri 16 . I pray🙏🏼 That we are around a long time. I said to my sister yesterday when asked me how I was taking this I said "I don't want to die"

[Babyjim in reply to Adela123]

I'm new and it's fearfull. Please mark me and keep me informed.

[dall05]

Hi Babyjim,

7 Years this July since PF came knocking after a sudden and vicious double pneumonia almost took my life.

living life in the slow lane now while waiting for the transplant team to call.

Tony

[Oncoolie]

Hi I'm sorry I can't answer your question but I just wanted to say my husband has PF. He's had it for 3 years and has deteriorated very little in that time xx

[Babyjim in reply to Oncoolie]

Thanks I'm new to this

[AngieB72]

I'm about 12 years in. Diagnosed 8 years ago but definitely had it much longer. It is only part of a variety of medical conditions that I have and I have no intention of going anywhere for quite a while!!

[MarieW-F]

6 years since diagnosis for me but i have PF rather than IPF so the cause of the PF is under control.

[Katinka46 in reply to MarieW-F]

Dead ignorant about PF and IPF, me. I had assumed IPF was Idiopathic Pulmonary Fibrosis and PF was pulmonary fibrosis. So IPF doesn't have a cause but PF does? Am I wrong? And do the two conditions have different treatment?

[MarieW-F in reply to Katinka46]

I think the idiopathic means unknown cause therefore difficult/impossible to treat.

My PF was caused by sarcoidosis but it's under control at the moment so it's no longer causing the Fibrosis so I'm remaining stable.

Mx

[Katinka46 in reply to MarieW-F]

Thanks. I think I get it. If there's a cause then the cause can be treated, (possibly!) but IPF just happens and so there is no way to halt the progress. A bit similar to my condition, Obliterative Bronchiolitis, another fibrotic condition that, in my case, did have a cause. So better chance of it being stable. Hmmmm....

Certainly for me the degeneration is slow but not really stable.

Thanks guys.

[Babyjim in reply to Katinka46]

I think your right. Mine is pf probably caused by reaction to a drug I was given after hesrt transplant.

[Sooki in reply to Katinka46]

Yes,IPF Unknown cause,PF usually has a cause,if they can find cause such as birds,or job related,removing the cause or treating it can usually be good outcome.IPF can only be treated with Pirfenidone or Nintenanib which slows progress but is not a cure.I am 4 years in with IPF and stable and I know of another who is 8 years in and stable,and others who have succumbed quickly,it's an awful disease that seems to be random who is stable with it,we just have to keep fighting and keep as fit as possible.Sooki.

[Katinka46 in reply to Sooki]

Thank you very much for that. So sorry that you have IPF. And well done for keeping going. I am interested in Perfenidone as it is being trialled for OB. Same reason: to slow down the fibrotic process, but I'm not sure my consultants will be happy to go down that route. At the moment I have no treatment or medication. So clasping at straws....

Kate

[winfar]

Hi, I was diagnosed 5 years ago but ct scans showed no changes and then last year I really started to feel unwell and breathless but after finding out that the probable cause of pains in chest etc were caused by gourd (pretty severe reflux) and being prescribed esomeprazole 40mg twice a day I have seen a big improvement and hoping it will continue. I also have been doing breathing exercises as shown in you tube video referred to by a member yesterday and as I don't have any treatment as yet but have more pulmonary tests and consultant appointment in a couple of months to check for deterioration with a view to taking a tablet which hopefully can slow progress there is not much else I can do but se how things go for me. Hope things go well for you.

[Babyjim in reply to winfar]

Thanks and good luck friend

[winfar]

Sorry I forgot to put diagnosis is IPF

[Offcut]

I had complete lung failure and was on an Oscillator for 10 days with bleeding lungs so have fibrosis as a result. I came out of ICU with 74% Lung function and I am now 54% upright 46% Flat.

This happened in 2008 so answer is YES! PMA worked for me?

Be Well

[Babyjim in reply to Offcut]

Yeah. Thanks and good luck

[sarcoid123]

I was diagnosed with sarcoidosis which is similar to pulmonary fibrosis 37 years ago, and am still going strong.

[Maureenpearl]

I was diagnosed with Lupus in 2006 and told in 2007 that it has damaged my lungs and now I have Pulmonary Fibrosis. I started using ambulatory oxygen in 2013 and I go away on cruises because it's less distressing than flying ( I haven't been in an aeroplane since 2010).

If you are determined to live nothing should stand in your way, even lung disease.

Please don't dwell on your diagnosis but on living and giving to others. I still do voluntary work when I can and I lead a fulfilling life.

[Babyjim]

Your comment is comforting and sweet

[Dons-2]

Hi babyjim,

I have PF caused by farmers lung, diagnosed at age 16. Although I've had a severely reduced lung capacity since, it remained stable until a couple of years ago.

I'm now 40 and just started using ambulatory oxygen as I have developed pulmonary hypertension and need to protect my heart. I've also just gone into the transplant list. That said, I still feel fairly well, work full time and have a busy social life.

I definitely think it's best to try to avoid reading up on life expectancy etc as its scary and may be self fulfilling. Xx