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living with pulmonary fibrosis
Started by: bert (621) Report abuse
how many people in Wigan are living with this illness.which there is no cure.there are different forms of this illness. I suffer with the illness which is called IPF which means idiopathic pulmonary fibrosis.the idiopathic means they don't know the cause ,people in the north west seem to have more chance than other parts of the country because of the mills and mines and asbestos related industries.or farming .nobody knows.but people are walking about with this illness because they have never been diagnosed.they think they have a chest infection and antibiotics will get rid.But the research into this disease is so minimal because it is not publicised like cancer or they just put it down as C O P D,but it is a illness which is a killer.Ifound out I was getting out off breath just going upstairs or small hills and just put it down to a chest infection which would not go away.i went to my doctors who could not understand I was breathing so bad.so I had xrays scans which is the only way to find this illness. t

Posted by: bert (621) Report abuse
I would also like to thank Dr Ashish and the nurses who have set up a meeting place for us suffering with this illness and trying to get the government to look into this illness more.so if you are suffering and it is not going away ask for xray of your doctor it is the way to find out.i now need oxygen a lot off the time.or look on the lung foundation web site.for information and help.i would also like to thank Tesco at Hindley for letting us hold meetings in one of there rooms.

Posted by: henry7 (715) Report abuse
It sounds similar to a chest condition my cousin had. Years ago he worked in the spinning room of a cotton mill and apparently the fibres got on his chest. Just wondered if you had ever done a similar job. It's a common condition with people who worked in the cotton industry, especially the spinning room.

Posted by: bert (621) Report abuse
Hi Henry no I did not work in the mills.iworked in a few jobs where their was a lot of dust .what it does it causes scarring of the lungs and the lungs stop stretching and start to shrink.thats why it can be caused by so many causes and needs a lot of investigation .

Posted by: tonker (19402)   Report abuse
A friend of mine has it. He worked down pit for 36 years yet, strangely enough, the medical experts say it has nothing to do with it!

Posted by: britboy (6760) Report abuse
My father-in-law worked down the mine for many years, he eventually got to the point were he wasn’t breathing well, Mother - in -law tried claiming compensation for Pneumoconiosis, he died before the claim went through and the hospital diagnosed lung cancer.
It played right into the hands of the claims board, I often wonder if the initial lung problem was Pneumoconiosis and eventually got diagnosed as cancer, the claims board dragged their feet for years and were renoun for dodging claims.

Posted by: atlas (164)  Report abuse
hi bert I have IPF when I was a lad I worked in a cotton factory for a short time then the building trade until I retired (PS see you at the next meeting)

Posted by: bert (621) Report abuse
hi britboy.this is why we need the illness brought to the fore.everybody has heard about cancer and heart charities to get money for research.thats why nobody can tell us why nobody seems to be interested. why so many people are so ill or dying with yhis illness.we are on medication which we take 9 tablets a day which makes us sickly and it thins your skin so you have to cover up when you are out.and I used to love holidays.but the insurances are just to high now .

Posted by: GOLDEN BEAR (3031)  Report abuse
hello brit-boy i share your grief my father had 100% pneumoconiosis cos he did not work for N.C.B he and mother got 00000000

Posted by: bert (621) Report abuse
hi atlas been with Johnie this morning still mixed up but I looked after him .ha ha

Posted by: trixie (4912)   Report abuse
Glad to hear that someone is thinking of people with this illness,

Thanks bert for publicising this information.
I have a friend who suffers from C O P D,.for years and not a nice illness
Take care bert.x

Posted by: bert (621) Report abuse
hi Trixie nice to hear from you.this illness we have got is a slow killer and nothing can be done .it is like a form of COPD but we have no cure or what is it cause .but we just carry on and dream of cruising again.

Posted by: paul mcnamara (1085)   Report abuse
It is indeed a horrible illness bert. My dad had this and went from being an extremely fit man to needing oxygen and unable to walk more than ten yards in a short space of time.On his final day he was even too proud to let the ambulance staff carry him to the ambulance, insisting he could walk. Nobody seems able to give an answer as to what causes this individually, just vague possibilities. You and your family have my deepest sympathy as I am fully aware as to how hard it gets for the person suffering from it and how hard it is for the family watching them and unable to do anything for them. Take care bert.

Posted by: bert (621) Report abuse
thanks for that Paul yes it is getting worse.i have oxygen now and it is getting harder and harder now ,but we cant give in can we .my daughter came this morning and told me she had joined up to do the three peaks challenge in Yorkshire.and she said you would have loved that dad if you where fitter .cause I love the open fields and bird watching.but don't get out much now .and my scooter is not safe over rough ground.i will have to get a kite .ha ha.

Posted by: paul mcnamara (1085)   Report abuse
A sense of humour does help Lovely area that. I'm a bit further east not far from spurn point where you would enjoy the bird watching. if i see some bloke dangling over the fields I'll know who it is!!

Posted by: bert (621) Report abuse
hi paul I was watching spurn point on tv last night .very nice it looks.don't think I will be making it to there.did you come from wigan .your name seems familiar.

Posted by: paul mcnamara (1085)   Report abuse
Yes bert. lived in Edinburgh Drive just off Billinge Rd and joined the RAF in 1986. I still get back to visit Mum and have a couple in the Venture from time to time.

Posted by: graff (11)  Report abuse

Posted by: bert (621) Report abuse
Hi Graff sorry you have been diagnosed with IPF.we have meetings every 2 months at Tescos in Hindley.and there is a meeting this Thursday it starts at 2 o clock till round about 4 oclock.Graff do you live in Wigan area.i live in Bryn near Ashton .there is about four or five in our area who have been diagnosed with IPF they don't all come to the meeting.but we hope some people will see this and get in touch.and people realise how many people are suffering and look for a cure.

Posted by: graff (11)  Report abuse
cheers bert ,I can.t make thurs as I have a hospital appointment at hospital but look forward to attending in the future. please let me know when next meeting is.

Posted by: bert (621) Report abuse
hi Graff the next meeting will be held on Thursday 25th of January .it will be held at Wigan hospice building at Hindley as we are running out of room at Tescoes.it will be tried there to see how people will take to it being at the hospice .some people may not want to go their.the last meeting was very informative we learned a bit and had a good laugh as well.just what we needed.so hopefully we will see you next time.


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