IPF sufferer.Male.

[Billybob10]

I am 72.I have IPF.I'm told that,after diagnosis,3-5 years is the usual survival time.It has been 9 years now in my case!Luckily I have been put on the Pirfenidone pill.(9 per day).I had to give up my singing career recently due to breathing probs.Just discovered that singing is best treatment for IPF! Annoying- or what?.On oxygen therapy now to keep safe level.

Trying Buteyko breathing method now which seems to help a lot.Can anyone advise if this is worth doing?Thanks.

[mrsmummy]

Hello and welcome to the site. I know at least one of our members practices Buteyko and I hope they read your post shortly.

[knitter]

Hi I have tried practising Buteyko on and off......it works best for asthma I think.....I have asthma and COPD with frequent chest infections .

The courses are very expensive and you have to be careful to get a decent teacher....my eldest daughter has found a very good one in London, my youngest daughter was not so impressed with hers.

I have a book and CD by an Irish author and practioner ...Asthma Free Naturally by Patrick Mckeown.

But the method is not suitable for everyone as the exercises can cause a high peak of carbon dioxide..you really need to get medical advice first.

The best thing I learned from my course was to try and breathe low and slow....no tight upper chest breathing but gentle belly breathing with a relaxed diaphragm....nose breathing to warm and filter the air....reduced breathing.

The aim of the method is to prevent ' hidden hyperventilation' and it has certainly helped me control and regulate my breathing and anxiety.

[Billybob10 in reply to knitter]

Not sure I would pay out for a course.I prefer to read it and self treat.I feel It's down to determination and positivity.That way you can only blame yourself :-)Good luck.

[Katinka46]

Morning Bullybob

I am sorry you have had to give up the singing. There are people on this forum who do sing and who run choirs for those with lung problems. I'm not suggesting that for you, of course, but what is important is that singing is one of the best ways to get the breathing right. And it may be that that has helped you keep relatively well for a few years? Your singing training will stand you in good stead even now, I think. Breathing low in the lungs, and exhaling gently in a relaxed and controlled way is the best, I'm sure, and that must be second nature to you. You do not see singers' shoulders shooting up to their ears when inhaling. I was lucky: I started with asthma as a child and I was enrolled on a programme at the local children's hospital. Part of the treatment was ultra-violet rays. (Weird, I know, we stood around in our knickers with goggles on.) But what was more important was that we were taught good breathing techniques, which as the years rolled on I learn more about and as a result of over half a century of asthma I was able to do everything that I could to help myself. And never panicked or hyperventilated. The conditions that I have now are different but that habit is still with me and continues to help me. I have looked at the Buteyko technique. Never gone into it and felt that what I was doing was probably good enough.

But what people may not realise is that for IPF patients the breathing problem is very different; with asthma and with COPD the problem is with exhaling because of air trapping and hyperinflated lungs. With IPF your lungs are restricted and smaller, and inhaling is more of a problem than exhaling. I know that some IPF patients on Pulmonary Rehabilitation courses have found the breathing exercises suggested there have not been appropriate. I can remember learning that for asthma you do not need to think about inhaling, that will look after itself, it is the gentle exhaling and easing out the trapped air that is more important. It may be very different with IPF when you are breathing in against resistance from lung tissue that is stiffened by fibrosis, and exhaling may not be a problem. Before doing anything more I would suggest that you talk to your consultant. Also there are Pulmonary Fibrosis patient groups, where you may find help and advice.

All the best

K

[Katinka46 in reply to Katinka46]

Sorry, just realised that I called you 'Bullybob', I think it's a predictive text problem.

Kn

[Billybob10 in reply to Katinka46]

Thank you Katinka for your great empathetic reply.I am lucky in that I can spend time in my studio, singing to my guitar and/ or to backing tracks.Perfenidone shows great promise for my ipf.I've had no adverse effects taking it,fortunately.The Buteyko idea gives me more optimism as it seems to work for numerous lung probs as well as asthma.

I'll battle on.It would be nice to think the pills will stop the alveoli damage progressing and the remaining'good' lungs will improve to compensate and 'normalise' my oxygen levels etc.Fingers crossed! :-).Thanks again for your kind help.Billybob.