Do you have Idiopathic Pulmonary Fibr... - Lung Conditions C...
Do you have Idiopathic Pulmonary Fibrosis (IPF)? What level of care do you receive?
Moderator81 VotersPlease select all that apply:
am in 9th year since being diagnosed, now near " end of life"
I actually do not have idiopathic fibrosis but non specific intestitial pneumonitis- fibrosis caused by an auto-immune disease. I also now have pulmonary hypertension caused by the same auto-immune condition.
liftman so sorry to read your "end of life" remark I was diagnosed 2 year ago and given notes to read about the condition which ended with 3 years from diagnosed. I hope not because I still have so much to do. you have to hope your time hasnt come just yet.
Liftman and Imelda I am so sorry to read your replies, I was never given anything to read giving me any information like this or even told about how it would progress. I quite often think about it and thinking I must ask the Consultant next time I go to see him. All the best to you and I hope they are wrong about you both.
Cheryl
I have Hypersensitivity Pnewmonitus with severe Pulmonary Fibrosis doc said ten years at most but I'm going to fight every way I can,I think that if you give in and not have a positive outlook then you can shorten the time we have left. Live for today and enjoy every minute you can.
I was diagnosed 9 years ago with IPF but find each day is the same. I do find my breathing has become more and more laboured but just accept that its part and parcel of the disease. We cant all be lucky enough to have lung transplants nor would we want to be. I'm only cross that i wont be able to see my grandsons grow into wonderful young men with beautiful young women at their sides and having the prospects of an exciting career. Life can be so cruel.
Maureen
Every breath is precious.
ha,maureenv,yes life can be cruel,so we make the most of what we have and keep on living,breathe well ,bernicex
I have lived with this condition for 10 years now and have no intention of giving up . I believe a lot of it is in the mind and what worries me about liftman is that he thinks he is near end of life . I have set several goals for myself .- another 20 years would be great . In order to keep on going I have Acupuncture every week and for the last year Hypnotherapy (to ensure I stay positive). I am on oxygen 24/7 2-6 litres a minute and go travelling a lot . Sometimes I have to use a wheelchair which I don't like but you get used to anything. I work on line training teachers - that makes me feel I still have a contribution to make . I take all the medication prescribed and some alternatives too . If you look at the statistics we are very lucky to have survived this long - in fact I did not know until now that so many had managed to get this far. . Hang in there /stay positive ( if you can ) /don't give up. I go to the theatre a lot and the concession for disabled are amazing . I even got to the women's boxing final at the Olympics . annieo
My husband has had IPF for at least four years. His condition has got worse this year and is now going on to oxygen. We saw the specialist last week and he has more or less done with us. We have been told he needs Palliative care now but reading all the things people put on here I don't think he is that bad. I have learned more on this site than anyone has ever told us.
Hi Mavary, my husband has PF and was diagnosed about 3 and a half years ago. He's really gone down hill these last few months, quite suddenly. He's not on oxygen yet, but gets really out of breath He had an oxygen assessment a few weeks ago, but it didn't seem to make much difference. We're seeing the specialist on Friday. I feel so sorry for him...this is really scary.
Hi Jolyn. Yes my husband has IPF and like your husband he has gone downhill in the last 8 months. He has had it for four years we think. It could be longer as he was having trouble with his chest for quite a while before. He is now on oxygen and like you I am worried sick. They have tried him on inhalers and different things but nothing seems to help. I have said we will not give up without a fight. We went to see a consultant privately in Bristol but there is nothing they can do. He said my Husband is a sick man. Have you got all the information on IPF? i looked it up on the Internet so knew what we were dealing with from the beginning. I didn't even tell my Husband till later. It was bad enough that I knew. How are you dealing with it? Has you Husband got PF or Idiopathic Pulmonary Fibrosis as I believe they may be different.
