Anyone out there with pulmoary fibrosis.

[anniediv]

Hello. My dad has idiopathic pulmonary fibrosis. He has been on 02 24 hours a day for a while.He isn't taking any meds any more to deal with the IPF. I don't really want answers to a specific question just would like to hear from anyone who has (or cares for) someone with the same condition.

[BLF_NorthWest]

hello the BLF North West put on a patient networking event for ILD/IPF patients and carers two weeks ago. We had 46 people attend and a number of leading health care professionals speak. If you send an e-mail to the North West team we would be happy to send you the presentations from the day. [e-mail]

[anniediv]

Thanks very much for your reply, I'll do that. Annie.

[BLF_NorthWest]

Hi Annie

Kelly has put them in tonights post for you, too big to send via e-mail.

Thanks Rob North West

[maureenv]

Hi Annie

I have IPF I was diagnosed 6 years ago but think I had it for more than a year before diagnosis. Don't believe the prognosis on Mr Google. I'm on O2 24/7 and take triple therapy. I take prednisolone, cellcept and NAC. I know quite a few people with IPF because we are on a forum on yahoo called paulmonaryfibrosis. Perhaps you should look it up on yahoo and join. Its very helpful, you'll find answers to most if not all of your questions on there because its made up of fellow sufferers and their carers.

Good luck

Maureen

[pigrot in reply to maureenv]

hi annie i was diagnosed four and a half years ago at first my wife and i were devastated but after looking it up on the internet and the veryclever pulmonary specalist we now take each day as it comes i no i will suffer greatly as will my wife and family but all i can do is join groups like this to talk to fellow sufferes and there carers i will have to say sorry for my bad spelling etc but i find that realy dose not matter i wish you all the best in what is a awfull time bob

[amagran]

my husband has been suffering from emphysema copd, and 2 months ago was told that in november his scan proved that he also had idiopathic pulmonary fibrosis. I am interested to know all I can about this, how to cope, what to look out for etc.

[maureenv]

Hi amagran

I'm a member of a very helpful forum dedicated to pulmonary fibrosis sufferers and their carers here is the web address if you fancy joining.

health.groups.yahoo.com/gro...

Maureen

[amagran in reply to maureenv]

thankyou, I have joined