As some of you know I have had to research my health issues and prove it is asbestosis and not IPF I have been suffering from and had the top medical experts discussing it because of my secondary health issues - I'm 90% convinced it is asbestosis and so is one of the country's top legal medical experts . If I'm around I have a court date sometime between Oct -Nov time ??.( It has taken me four years to get to this point and shadows a research project I wrote 3 years ago).
How many people out there diagnosed with IPF have
a) Gained weight and struggled with weight loss as opposed to struggling to maintain weight?
b) And how many of you have stabilised or even improved your condition for longer than six months rather than being constantly on the decline?
It would be very interesting to hear your opinions on the above
Many Thanks in Advance Plumbob
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Plumbob
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i dont know much on either of them ..but i do wish you good luck with your court case.
Wow Owen, research certainly pays off and l do wish you all the best when you go to Court. Isn't is rubbish though to have to fight so long and hard to prove health issues when you are already ill.
I have Pleural Plaque in my lungs which can only be caused by asbestos exposure, but they won't except that I have had sufficient exposure to cause asbestosis (in my eyes you only have to breath it in on once to get it in your lungs, which it clearly is by the Pleural Plaques ?) If the companies lawyers accepted my claim at the start, I would have had a reasonable level of fitness to enjoy a bit of the compensation, as it is now I very rarely leave the house so I will receive no benefit myself but will know the wife and kids will be ok which is peace of mind to me. All I have to do is try and survive until the court date ???
It seems so hard that you have to work your socks off to get this to court, but I suppose that's because there's compensation involved. Look after yourself now, try not to get too over stressed and let us know when you have a date for the hearing so we can give you heaps of good luck wishes! Sue x
Cheers Watfordgirl. It is annoying that I've had to fight for everything, but one thing you maybe don't know about me (I think some on this site have recognised it?) is that I have never worried or stressed over things, and I am lucky I can do that. My wife stresses enough for the both of us (poor lass) .
My view on life is try your best you can't do anymore, so why worry and stress over things out of your hands. You can spend a week worrying over something then the following day it's resolved so why worry about it in the first place. Stress and worry are a wasted energy, so use that energy more productively and enjoy what you've got and not worry about what's going to happen.
Friends do say how can you be so happy about things when your going through all this s**t and living on borrowed time? My reply is 'What's the Alternative' do I just just sit and feel sorry for my self. You just have to deal with what life throws at you the best way you can and that's all you can do.
Maybe it's easier said than done but I seem to manage it. I also have a twisted sense of humour? I booked my funeral on Black Friday and tried to get a good discount!!! Didn't work though !!!
Hi plumbob I can't help you regarding the above but some years ago 1970s we had a big fire at a big army stores I was at secondary school.
The roof of this building was asbestos and it spread for miles. The powers of b denied for years as to why people had lung problems.
About 5 years ago a solicitor in the area took on this case and one women who was effected was in the same year as me at School she died last year sadly but at least people are taking note and not brushing it under the carpet.
I remember it well all the white dust particles all over the place but what makes me so angry is when people say it wont harm you unless you disturb it. I think this statement is rubbish and its slap dash comments like that make my blood boil.
Onamission -I worked around it and with it for years. But Europe came up with a calculation to say you have to bath in it first before you may possibly have breathed some in. The plural plaques I have are proof I have been exposed to it and breathed it in, but they still won't accept it. That's why its taken me 4 years to prove it .. It's frustrating
What a stupid statement to make I would gladly fill a bath for the idiot who said that.
We have a big problem with asbestos in the hospital we joined as a trust, It was built in the early 70s of concrete block and metal rods looks more like a concentration camp. They employed a guy to find the asbestos and when he did they wouldn't pay him so he took them to court and was awarded £10,000 he recommended these walls of asbestos in the neo- natal unit and that changing light fittings would disturb the asbestos these walls are still in the hospital.
I can fully understand your frustration and the way things are pushed under the carpet just make me more determined to come back and haunt some of these idiots.
MmeT - I decided not to have a transplant as there was issues with a secondary condition I had and the proffessionals couldn't explain how it would affect my survival rate which was already low
Hi my hubby has Ipf he was diagnosed 3 years ago and is better shape now than he was then. He only takes one inhaler. They thought he had asbestosis at first because he's been in construction for 48 years. He's 72 and still works in our office but not on site. He has what they called ground glass areas in his lungs caused by pneumonia and statins. He also had nodules but they went when he stopped the statins. xx
I hope this does not come over as alarmist ? Broken glass affect is a indicator of asbestos and some other conditions unrelated. As you say if he is in a better shape now it all could be stable so not a worry.
Hi. I think that's why they thought it was asbestos related. It could still be I suppose. He coughs a lot and sleeps a lot but he don't worry to much about it. His attitude to it is he can't change it so he gets on with life. He will work till he drops he has no intention of giving up. Our 3 sons run things now (and 7 of our grandsons) but he's the driving force and is very involved. He hasn't deteriorated much in the last 3 years but he knows that could change. He's never smoked so that helps. He also struggles with his weight no matter how little he eats . xx
Oncoolie - Glad your hubby's going strong I too was in the construction industry as a heating engineer then progressed but my condition forced me into retirement at 55 . I also have ground glass areas (and wondered if it was related to fibreglass?) I also have a lot of honey-combing in lungs and areas which have died off ?But while fresh air is free I'll keep sucking it in LOL
My hubby said they used to cut asbestos pipes with a handsaw years ago. He has a positive attitude to his pf and don't let it get him down. He said if he stopped working ( he's always been a workaholic ) he would sit and waste away so he keeps going. One day maybe...I hope you stay as well as you can be as you say air is free lol
In 2008 I was in ICU and was asked all of the time if I worked with asbestos I said no a substitute. However in 2012 I found I was working for over 10 year with brown asbestos.
I have now hit a break wall from doctors to confirm it?
a)I do have a great problem losing weight and eat little to try to lose it but fail.
b) I am losing approx 3% lung function a year? They did say my lungs have changed but are still failing?
cheers offcut - IPF doesn't tend to level out, but mine actually improved slightly over a 6 month period (which is just as well because my decline was going like a freight train?).
I also eat very little and not on steroids now but really struggle to lose weight and I know my inactivity doesn't help?
Were you involved in the natural gas change over? Or you to young? I was cutting asbestos on a circular saw for loads of fires that did not have any at there backs for engineers on the change over. No Masks or vents!
It's no wonder so many people has lung diesese when you think about it now. I'm 65 can't remember when gas came in but I can't have gas in my house because I'm asthmatic and allergic to it. My hubby was brought up on a farm so I don't suppose that helped his lungs either. X
I was Offcut and removed and replaced a lot of boilers, even the new ones had to be caulked with asbestos rope, and had asbestos flues. That doesn't take into account all the old asbestos we removed from the pipework to modify it. You were working in it day after day but legislation (Helsinki Agreement) says that doesn't mean you've had sufficient exposure to catch asbestosis from it..... aaaarrggghhhh
Just like walking across the road with your eyes shut.
They are using the facts that if it is not disturbed then it should be okay. As you said it only takes a fibre to cuase problems. We cut it on a circlar saw and then cut out the flue with a jigsaw We never used masks or anything. We were told it was not the dangerous blue asbestos Then I found out to late it was in fact the second most dangerous brown asbestos!
Hi I like you worked with asbestos changing boilers flues etc cutting it to size then in1984 I coughed a clot of blood up and after exay found I had lung cancer I had 2 lobes removed went on for another 10 years it came back and another opp to remove the rest of my lung leaving me with just 2 lobes one side I managed ok and was forced to give up work as I got bowel cancer a short time ago I decided to put in a claim and submitted all copies of the hospital records and reports. But I was told I had the wrong sort of cancer I had carsanoid and I needed carsonoma Co my claim was denied I thought cancer was cancer. But it's not when it comes to claim also a friend in the same trade gas plural plaques and they told him he could not claim. Best of luck mickmm
The government were paying out for Plural Plaques but as so many were claiming and it didn't allegedly affect your life too much they decided to stop handing out compensation for it !!!
Great to see you Plumbbob! I have been wondering why I hadn't seen any posts from you recently but then I have also been very busy doing something very similar to you but not connected to Asbestosis. I am very relieved to have survived until I achieved my goals.
I was told I have Non-Specific Interstitial Pneumonitis. I don't know the difference really between Pulmonary Fibrosis and ILD. I have hardening of the lungs, widespread groundglass, some air-trapping, bronchiectasis, septal thickening (or is that the same as hardening of the lungs??) and, I think, one other thing that I cannot remember. I was unable to have a lung biopsy which may have been helpful in establishing the cause. I also cannot be considered for a double lung transplant. I think I was diagnosed in 2013 and was put on oxygen in 2014 as far as I can remember without looking everything up.
I hope everything goes well for you. Would you be able to get the case brought forward? - that seems such a long time to wait! I suppose you have already tried to do that though. I hope you are successful with your case.
Glad you achieved your goal Twinkle My court hearing has been programmed to heard after all evidence is collated and the defence lawyers are scrutinising everything and have requested an engineers report to query on how I used and came into contact with asbestos. That takes 6 months. They have been querying my health care cost until death, and had there own specialist look into it to challenge costs. Iv'e just heard today they aren't going to challenge it in court (good news) But I shouldn't have to fight for every penny ?
I believe that they will settle out of court as I think my case is strong and they are just trying to minimise the pay-out ?
It is scandalous that you have to fight a court case when dealing with this horrible nasty illness. I do wish you good luck.
My hubby has Pleural Plaques diagnosed about 35 yes ago and told at the time, they won't bother you for 20-30 yrs....Well they have bothered him a lot. Pain and soreness all the time but consultant says he is imagining pain as they don't cause any.
He,s had scans and been told no Pleural thickening so no problems.
I am sick of watching him go downhill, he has no energy...Uses it all up doing physio so he can breathe. Old before his time...Took early retirement and lost out on pension due to the fatigue which is way outside of being extremely tired as I,m sure you know.
His only treatment is Carbocysteine and pain meds.
Of course we know how much worse this could be and that others have greater problems, and feel for people but itstill doesn't take away the pain.
Carbocysteine just helps to reduce and release mucus. Depending on the extent of pleural plaques is relative to the affect it has on the individual so to say they won't bother you is incorrect ? Obviously it's bound to have an affect on your lungs ( major or minor) as it is an alien body in your lungs ??
I had to take early retirement but have a small pension + DWP to survive on and still have a mortgage to pay ....My wife had to resign her well paid job to look after me (she gets £60 /week as carer ) As she was on annual contracts and not full time contract we can't claim for her loss of wages Grrrr. I am hoping to survive to see my 60th birthday and court case resolved by Dec 2017 ??
Hi Owen, I so hope you survive much longer than to see your 60 the birthday and wish you well regards the court case.
Disgusting that people with industrial related injury/ disease have to fight for the help they deserve.
As usual our government moved the goalposts on PP,s stopping compensation claims when it got too expensive !
At least we managed to pay off our mortgage so in that respect we are not in your position.
I unfortunately have ms so am limited in the help I can give hubby to make his life a little easier.
I am now looking into your comment about ferritin, may have to get that checked for hubby as he does have some heart issues going on and is losing weight...Despite eating pretty well.
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My court hearing has been programmed to heard after all evidence is collated and the defence lawyers are scrutinising everything and have requested an engineers report to query on how I used and came into contact with asbestos. That takes 6 months. They have been querying my health care cost until death, and had there own specialist look into it to challenge costs. Iv'e just heard today they aren't going to challenge it in court (good news) But I shouldn't have to fight for every penny ?
Asthma advice/sharing your symptoms/peace of mind please. 
persistent cough for 3 years
Update for all interested 
Bereavement and loss.
Any carers out there? Feeling overwhelmed.
