Asbestos & Diagnosis

As some of you may be (or not be) aware. I have fought for 3 years to prove I had asbestosis, which was my original diagnosis.

Because I was going down hill so fast all the 'Top Dogs' have said I had IPF and not asbestosis as asbestosis was a gradual decline and not aggressive? but non could answer questions about other issues which I had suddenly developed, such as a level of ferritin (1800) which nobody had ever heard of being recorded before and even sent my scans to Australia to try and get an answer from their experts and why 9 months of chemo did not affect the levels. I strangely developed a connective tissue disease and other issues.

At the rate of decline they gave me less than a year to live and had me assessed for Lung Transplant, which I have refused as there was far too many questions they could not give answers to.

We (my wife Nevin and I) did our own research, we proved a link between 95% of my symptoms and asbestos related conditions. We wrote a report and sent it to the 'Top Dogs'. From those who responded the general consensus of opinion was that they could not prove (or disprove) our findings, as insufficient research had been done in this country to verify or dismiss our findings. What we did find in our research (mainly info from America and in particular the reports written about an incident in Libby, Montana), was that due to the asbestos exposure patients tended to show an aggressive downward spiral for approximately 2 years then deterioration levelled off / slowed. To everybody's surprise my last 2 lung function tests have shown a stabilisation of my condition ( IPF continues being aggressive and can become more aggressive but doesn't stabilise ???). After 3 years of fighting I can now start making a legal claim and my condition can be treated in the correct manner. Please do not get me wrong my consultant has been brilliant and brought in a lot of specialists to try and identify and treat me as necessary, but unfortunately for him I was showing unusual and complicated symptoms

But the important thing is you know your body better than the doctor and he only asks what he thinks are pertinent questions and your reply helps him make his assessment, but he mightn't be asking the RIGHT QUESTIONS? so its up to you as a patient to inform him of ALL your issues, and if your not happy about treatment or diagnosis GET a SECOND OPINION -Its your body and your life.

Hope some of this is useful to someone especially the last paragraph regardless of your condition.

I know I won't see retirement age but I am happy in myself and positive. It's better than being depressed and upset as I can't do anything about my condition. Remember A smile uses less energy than a frown so keep smiling folks

Plumbob X

16 Replies

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  • Inspiring, informative post Plumbob and just goes to show what can be achieved through knowledge, research and determination.

    You do indeed know your own body, we all do, but it's convincing the doctors etc to listen and look at the bigger picture.

    Good for you and l admire your positive attitude.

    Take care xxxxxx

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    These are 2 I found for the UK as Im not sure where you live but you deserve to be heard and compensated, this is your life.

    Hope it might help doesnt hurt to have a look or give the second one a call. I dont believe you pay until you win.

  • Thanks Bandit it's appreciated but with being in a trade union they appointed a company for me free of charge, there is no way especially being pensioned off on ill health could I have hired one :P :P I know there are a few now that do a 'No Win' package. The claim has been submitted to the Royal Court of justice in London. We did a lot of prep work whilst I was arguing over my condition

    Cheers

    Plumbob

  • never hurts to get a second opinion just to be sure your interests are being looked after properly, union or no union, you have to look out for number 1, who would know anyway its confidential.

  • Dear Plumbob and Nevin, I do hope that you get your well deserved compensation in time for you enjoy it together. xxx

  • Azure I'm impressed you remembered my wife's name - well done. It will be peace of mind for me that Nev and the kids are looked after. So I'm not going anywhere until its resolved - Always had a stubborn streak in me :) :)

    Hope your keeping well (as much as you can?)

    Owen X

  • Hope everything works out Bob. I fought with the Doctors myself 3 years ago to prove my continual shortness of breath at the time was something more than just an exarcebation of my asthma. I have been proved right as I was since diagnosed with COPD and Bronchiectasis.

    Good luck with the compensation, and you're right - its best to keep smiling!

  • Cheers Symes - Unfortunately some people are overcome with titles and positions when we are all humans. I was an engineer but would speak to and respect a bin man just as much as I would a director. It did lose me a couple of promotions tho :P :P but what the heck everyone is just as important as the next guy

    Take care

    Owen

  • Exactly, they are. I've worked in the Civil Service, and dealt with everyone from messengers and security guards to high level Ministers or Judges. Treated them all equally. As you say, no one person is more important than the next, irrespective of the job they do.

    Regards

    Symes

  • Hello Plumbob, its good to catch up with where you are with every thing. I hope you continue to level out, seems we have reached a plateau as they say 😄 Don't believe in the doctors like I used to, too many anomalies but I believe in the power of our own minds and thoughts, keep on keeping on and may you and your Wife enjoy many more happy years together ,huff x

  • Cheers Huffer - I'm just stubborn (asked the wife-i'm always getting told off :P ) We all need specialist for everything but you have got to balance out all the information provided

    Keep on Puffing

    Owen X

  • Hi plumbob defo know how frustrating can be talking to so called professionals ... Today I was having spat with my lung doctor HE had troble believing public can buy microscopes and look for them self at whats going on.

    He hates it when I say am perfect specimen lol BUT on serious note yer he said same the only diagnose asbestos threw ct scan's pretty much like you all ready know ANYWAY let him know how much I disapproved.

    So I have question for you WE know about your feritin BUT do you know what your MONOCYTE count from full blood count is by any chance.

    Mine was slitty elevated BUT you have to look at bigger picture to understand what that mean's

    Most doctors look at one thing and make clinical judgments on that Totaly mis bigger picture AS like the say o that's not my job remit

  • Never looked into Monocyte, Not sure of its implications and never come up in conversations ???

  • When you have time google asbestos monocytes.

    Might even surprise you with re ipf feritin etc.

  • Letter to a consultant:

    Dear doctor,

    When you are old and grey and pottering in your cabbages your granddaughter ---- let us call her Molly ---- a Junior Doctor at Kings, will say to you. "Granddad, we were chatting the other day and one of the other junior doctors said that in the old days when you were a doctor you guys actually held Multi-Disciplinary-Team-Meetings and DIDN'T invite the patient to come and contribute to the discussion. We couldn't believe that. Please tell me, Granddad, that it isn't true? I mean, how could anyone hope to get an understanding of the case without having the patient there? And listening to what s/he had to say?"

    And you will say:,"Sorry, darling, but it is true." And if you are feeling really brave, you will go on to say: "And only a few years before that patients weren't even allowed to see their own notes." And there will be a resounding silence as Molly picks up her jaw from the ground.

    Dear doctor, it will come, I believe and hope that it will, that eventually patients will be treated as the well-informed, intelligent, resilient, tough-minded adults that they (we) are.

    But, sadly, not in my lifetime.

    With all best wishes and respect

    A Patient, who has had to wait years for the medical world to catch up with her

  • Hi Plumbob well done for taking on the Doctors all you want is treatment for your condition I have a similar situation. I have many symptoms of Lupus breathing difficulties being one the Doctor I saw didn't know what was wrong with me and put all my symptoms down to taking steroids for the COPD even loss of balance. That leaves me with all the symptoms with no treatment I don't care what they want to call it just give me the treatment.

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