my mum

I am so sorry for your sad lose. My father-in-law is in hospital at the moment with this condition only to be told by his specialist that other than steriods there is nothing they can do. He spent 24 years in the Army and has always been so fit and healthy. He still now goes out for long walks in the forrests where he lives but finds it so frustrating as he can not do what he used to. He is 60! We are frantically searching the web for some hope. He was originally diagnosed with this condition in 2001 and luckily they found it early enough to take preventative measures but it progressed quite quickly over the past year (which should have been picked up by his GP as he kept telling him something was not right but the GP send him home on every occasion). I lost my Gran quite a few years ago to lung cancer (I was brought up by her so we were close) she had a painful shoulder and she kept getting sent home by her GP with anti inflamatory gel and told it was her age and we all had to put up with these aches as we got older, but no, it was the cancer that had spread to her bones and it was too late by the time they found out (through her catching pneumonia) to receive treatment and she died 3 months after they diagnosed her. I feel your lose and your pain and believe me, your bitterness also. I know doctors are human and can make mistakes but surely they should listen to what their patients are telling them, afterall, nobody knows our bodies better than us! The pain eases after a while but I still feel bitter towards her GP and keep saying to myself \"if only\". My prayers and thoughts are with you xx

My dad was diagnosed with fibrosing alveolitis when he was 58.

He did not respond to any medication or steroid treatment, and despite his age, did recieve a lung transplant.

His disease was so advanced, and so bad that he was originally supposed to have a double lung transplant.

Unfortunately, only one lung was available, and if he did not accept this organ, he would have been dead in a matter of days. He accepted the organ and immediately was taken to hospital for his operation.

The effects of the surgery were noticeable immediately, he had good skin colur, and was able to breath unaided within 24 hours, something he could not do just hours before his surgery.

My dad had his transplant nearly 12 years ago and is in good physical health. Patients are closely monitored, and have a full check up every 6 months.

It has made a great deal of difference to his quality of life.

I can't believe how many posts there are on here about FA, and so little is said about transplantation. And the posts i have seen, say that patients are given a 2 year life expectancy! Thats unbelievable, and not necessarily true.

As i said, my dad is still here nearly 12 years on, and was literally on the brink of death. He was bedridden, on 100% oxygen, and couldnt even go to the toilet. That is how ill he was.

My mum used to leave the back door open in case he died whilst she was at work and the paramedics/doctor needed to get to him.

The financial impact of this disease is cruel too, my mum took so much time off to nurse dad, she almost lost her job. She had been with the company 20 odd years, and they treated her terribly.

All those suffering with this awful disease, and their families....press the consultants for transplantation. It can totally turn this horrid illness right on its head.

I hope that people can take hope from my story, i have just stumbled across this site, and is the first time i have shared this.

Best wishes, and never give up hope.

I can relate and sympathise with you all. My Mum died in 2000 only 7 months after being diagnosed with FA, it was too late to help her even though she had been back and forth to doctors for at least 2 years with a terrible cough and repeated chest infections. Then my sister was diagnosed with IPF in 2002 at the age of 45. The same consultant has been treating her and for the first 2 or 3 years after diagnosis she was reasonably well. She had to retire from nursing her career for 30 years. 18 months ago she began getting very ill and has steadily got worse, they were going to refer her to Brompton Heart & Lung Hospital but she got a pulmonary embolism in December 2008, they are trying but nothing seems to be working. Today she rushed in to hospital again and as I write this she is fighting a chest infection, pulmonary embolism and kidney infection and is on 15 ltrs of concentrated oxygen but still her oxygen levels are dangerously low. I keep telling myself that she will pull through but it is so hard to watch her suffering like Mum did. As with you all it is hard to find much info on this horrible disease as it is quite rare, but I suppose the only positive is that I'm told life expectancy is usually 3 - 5 years from diagnosis and at least 7 years later my sister is still with us. I go through so many emotions, anger mostly because it's so unfair and sometimes fear as we are told that it can be familial, i.e. run in families so I get scared more for my own sons than myself. I always thought I didn't believe in god but lately have found myself praying.

Hi Sadsis, i am the person who wrote the above post about my dad.

My dad had a pulmonary embolism last october, but it was caught before it did any real damage and he is now on warfarin therapy.

I really hope your sister is treated and so can progress with the referral to Royal Brompton. My dad had his transplant in their other hospital, Harefield.

They are wonderful, they monitor their patients so closely. It was when my dad went for one of his check ups that the doctor noticed he was breathless and so immediately admitted him and that was when they discovered his pulmonary embolism.

I will too say prayers for your sister xx

Hi Alex08,

Thank you for your thoughts. My sister passed away on the 19th February. Although she was very ill the end seemed to come so suddenly. It has been a very difficult time for us all especially her daughter. I was with my sister at the end which does give me some comfort and am tryinf to help her daughter by just being there. Can't help being very frightened as well as although experts say it doesn't run in families, am more scared for my own children. I can only urge people to seek treatment as early as possible. My thoughts and hopes go to all those people out there who are battling this horrible disease.

Hello. It is somewhat comforting to read these posts, even though this terrible lung disease has no cure.

My mother has been suffering from FA for five years now. She has reached the point where she is on oxygen 24/7 and has great difficulty doing anything without getting so breathless it is heartbreaking to watch.

I have been bathing her for a while, but now she finds that so stressful that we have decided that a bed bath would be better for her.

She is not afraid of dying, but is afraid of the manner in which she will die I, too, worry that she is going to be gasping for every breath as she dies.

We have had good medical care, but now we are left very much to ourselves - no one checks on her at home unless there is a crisis. I cannot be there every day and feel very guilty about it. My stepfather is 86 and he copes as well as he can.

It is so soul destroying when you know there is no hope.

I want her to die in her sleep so that she doesnt have to continue to suffer this purgatory.