This is so difficult for me .I was diagnosed with Intersitual lung disease probable hypersensitivity pneumonitis secondary to my occupation in the building trade as a painter& Decorator breathing in various dust including being exposed to asbestos on a regular basis from the age of 15.
I was in so much shock at being told this and being shown my scan of my lungs which highlighted the heavy scarring I came away having not taken anything in nor did I ask any questions I just could not wait to get out. I have since undergone more CT scans and await another full lung function study . I think I'm in denial of being ill and am hoping it will go away .I don't feel too good at the moment and really don't understand is this serious or not as I don't seem as ill as a lot of our members on here.I don't understand why my previous lung function test are satisfactory yet I struggle to breath at times .I've been to see my local GP but all he says is it's not his area of expertise and I should have asked the consultant the questions I see my consultant in September and In taking my wife with me this time .Questions on my mind are is this COPD will it get worse what can I do to get better and what should I be asking when I next seey consultant .Sorry for the long post but I've held this in since JUNE .Thanks for reading .
Written by
ProudYorky
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
37 Replies
•
Ask the consultant as this is their field. I hope you get the answers you require soon
ILD I think is cop out for asbestos history ... I would ask expert consultant WHATs the difference
Reading your story AND clearly no expert I would ask do you have traction bronchiectasis
If he says possible the ignoring your asbestos silca exposure
Do a search. No such substance exists, so I am not wrong. But once again you knock the medical profession, in your usual unqualified and clearly uneducated manner. When are you going to have some respect?
You are just being silly. You are foisting your own personal obsession onto others needlessly. Read the original post! The poor man is worried sick, he is not a demolition worker, he is a painter and decorator! Nothing to do with asbestos sheeting at all. His exposure to asbestos dust will probably have come from mixing up a compound called Artex which used to be handled by painter and decorators.
Further more you are still making a diagnosis of, I quote you, "....but to have issues you have ITs eather asbestos or lupus" which you are not qualified at all to make. Neither is it helpful in any way, other than to increase the anxiety of the original poster.
It is you that have little understanding of ILD, if you did, you would not be unemployed, you would be a world leading Respiratory Consultant or even a Professor. Try looking up the meaning of the word "Interstitial", so you think that you know what the medical world does not? how very arrogant of you.
I still say that the substance, cut and paste, from your own post, I quote, "asbestos silca" does not exist. Further more, the world does not and never will, revolve around your own personal obsessions, with asbestos sheeting.
It is patently clear that your , unqualified, diagnosis are so clearly wrong. Also my research is bang up to date not like yours that is consistently way out of date by 10 or even 15 years old. You are nothing more than a "toxic person" with your constant complaints of the medical professionals and the NHS. Do you recognise yourself?
I’ve got CTD NSIP I’m sorry, I don’t understand much of it.
I do know it makes me very short of breath.
It’s hard to take it in. I wake up sometimes and think perhaps it’s a dream. It’s not.
Write down your questions before you go to see consultant.leave spaces for answers.
Take a pen that clips to your clothing so that you don’t lose it.
If you don’t understand,ask them to explain in layman’s terms. Your GP won’t know anything about NSIP.
THeres nothing FOR patients on the internet.its all for the professionals.have given up looking.
Generally you need to look after yourself,try to eat properly and rest when you can. Don’t know if you are still working or not,but if you are you need to try and pace yourself. Start writing your questions down from today
Thank you it is so confusing but I will take on board what you say I will be more prepared next time I'm 63 not able to work anymore unfortunately yes the internet I find is confusing
You are entitled to be scared,I have had asthma for 30 years. NSIP is something else!
Worst thing is that as it’s so uncommon that there is little or no info.
available. I went to a chest clinic,all the leaflet# were about cancer.
Even at the centre of excellence I go to there are no leaflets about NSIP.
SO, make sure you’re getting what you’re entitled to.
Apply for a blue badge,makes life a bit easier.
Go to the Citizens Advice Beaureaux and ask them what you can apply for.they are excellent at helping you fill in forms.theyve got a national helpline,which is the best way to go.
I rang a local branch,they told me the wrong time for an appointment,so didn’t bother with the branch again. I was lucky in that I man to work till I was 66. I’ve had loads of tests and blood tests since diagnosis,so be prepared. Take care
Oshgosh many thanks for your advice as I have found not a lot of info even on the net .Its my own fault for not listening to the consultant and not asking questions at the time plus not having my wife with me didn't help. I just thought I had a chest infection and a lot of fuss about nothing got that one wrong I will apply for blue badge would make things easier on top of all this I've had to endure ESA assessment which Im classed as too ill to work but had to go to an assessment centre then have the worry of the waiting for decision,well I'm 63 now so 3 year I'm retired plus I'm fighting for PIP as they turned me down going to tribunial so it's all happening thanks once again you take care
Hi I’m sorry to hear your diagnosis I don’t know anything about it so unfortunately I can’t give you any advice. What I can tell you is keep fighting for the benefit your entitled to, a lot of people get turned down at first and like yourself end up going to tribunal I really hope you win and get the highest rate as they sometimes give people middle rate but I know a few people who after receiving middle rate still put in for a re consideration and eventually get high rate after all it means you can get a mobility car if needed and more money for Carers allowance part . All the best with your hospital appointment and your tribunal . I hope you let us know how things go when you do see consultant again I’ll be thinking of you as I’m sure many others in the group will be to. Please take things easy especially if you’re feeling breathless maybe even sit up with pillows to help support you so your not laying flat and just try and relax , I know it’s easy to say relax rather than actually being able to do it. I’ll keep you in my prayers 🙏all the best 🌹🌹
Shazrab Many thanks for your Kind words it's lovley to have the support from this group. I will keep you all informed as I know we all gleam info from each other. As for the pip I initially was awarded low rate care that was it so I asked for them to look again sent them even more info from Drs consultant ect .They wrote back and said they hadlooked again but we're standing buy there initial decision .So I had to go through process of taking it to tribunial .Filling forms in once again anyway a month after receiving my notification from the tribunal I received a phone call out of the blue from DHSS they said they had another look and we're now willing to offer me low rate care and low rate mobility .I told them no and still going to tribunial . But round our area there can be up to a 12month waiting list for a court date .I nearly did accept it as when they rung I wasn't feeling too good and was thinking let it go l'd had enough but I thought no I'm still a fighter ,So that's where I'm at at the momemt sorry to go on .Once again many thanks take care 😃x
Hi I’ve only just read your post. It’s not good enough that your doctor’s only reply is to tell you that you should have asked your consultant. I guess doctors who say such things have never been patients themselves. Yet. They don’t understand that apart from any state of shock, you just can’t take all that information in, it’s overwhelming. Thanks to this forum I know to take a pen and paper to any appointment and if necessary I ask the doctor to write it down. One doctor I saw recently seemed to talk only in initials, in the end I asked her to write it down because I couldn’t remember them long enough to even write it down. We don’t all have a physician’s vocabulary. (Although if you hang out here long enough you’ll start to!) Taking someone with you is a great idea too. I hope your appointment next month goes well for you 🤞
Thanks I know what you mean I have a greater knowledge already although some statements do confuse me and yes the use of initials by the medical professionals does iritate me HHP ,😄
ILD is the category of lung disease, I think there are over 150 different types in this group including Sarcoidosis, pulmonary fibrosis and hypersensitivity pneumonitis. COPD is another category which included diseases like asthma and emphysema. ILD’s effect on the lungs and treatment can be quite different to COPD. I also think hypersensitivity pneumonitis is quite rare so your GP may not know much about it.
Many thanks Thomas as I read more and more posts and try to investigate more on the net I am starting to realise it's not a common disease . I also am starting to realise how much of an injustice I've done to my GP who over the past 12 months has done his best with getting me to see consultants and receive scans ect . I think I'm more angry with myself for not taking in what my consultant said and not asking questions plus an arogance of they've got it wrong there's nothing wrong with me attitude .It's just suddenly starting to hit me now I see my consultant again in Sept will be more prepared I hope.
Thanks once again 😊
I knew commercial painter who use to mix asbestos like you describe in artex HE never give asbestos a thought until he started having heart trouble.
He use to paint factories in Trafford park and when we talked about all asbestos roofs and dust painters have to clean off roof iron works befoure painting he caught the willies.
Is shame as was only time he give asbestos roofs a thought
Yes the thought never entered our heads I became after my apprenticeship an excellent decorator through the week with my company I worked on some magnificent Stately homes and one or too well known artists homes inc the late Charlie Williams in this work obviously I didn't really come into contact with large amounts of dust .But to be able to afford to pay mortgage and support my family I worked on the industrial side of the company on a weekend This involved mainly paining new and existing metal structures .Some of these places were factories built in the 1800s used as sawmills paper Mills and cotton Mills around Huddersfield and Bradford .We obviously as your friend stated brushed down century's of dust bird muck and probably Asbestos from the roofs .We also worked on the pit heads around Yorkshire removing every kind of dust imaginable before coating girders ect with Marcasious Iron oxide paint or Rubber based paint which in itself looking back used to make us feel dizzy and sick by the end of the day .I look back now over the 48yrs or so in the trade and think how lucky I am to still be here .
Don’t give yourself a hard time it’s a lot to take in. My advice for your next appointment is take someone with you an extra pair of ears is good. Ask the question you are most scared of as the answer may not be as bad as you fear. Don’t google you will put 2and 2 together and make 12 😂
there is no need to be flippant , JAS, we are really how do i put this, in kind way, ok we are all on hear, wanting to no things, health wise, wisdom wise, but basically to stay alive, you agree with me, JAS, so can we agree, to stop attacking each other, be kind ok, in our answers to one an other, we are all hear for the simple reason, as you or I, and many others on hear, be kind be humble to each other, as you can be, not fish wife flippant remarks, good night JAS ,
Hi Kakariki, I think it is a shock to hear a diagnosis and when first told, you dont take anything in, we are all pretty much the same, but you dont have long to wait until you see your consultant again and it seems like you are prepared this time. I haven't heard of this disease but am sure there will be a few on this site that know about it and come along soon. I think with so many people of your age that have done those jobs that you have outlined, there will be more and more people that will be having problems now and expect it will become a common disease. The 70's through to the 90's nobody knew the damage being done to peoples health , the results are now being seen. I do hope that you can get some answers when you see the consultant and this in turn can ease your mind. Please keep us updated x
Izb 1 many thanks for your kind words you are right I have had some great feedback and 2greys has giving me some fantastic links ..It is a strange disease IDL but I have better understanding now I know there no cure for it and my lungs are heavily scarred but I'm a very positive person normally I think it was just a case of I wasn't expecting it to be this when I went for scans ect I thought it was just a chest infection that everyone was being a bit over the top with .That's why I didn't take anything in the consultant told me .I was on my own as I asked my wife not to bother coming as I'd be in and out in 5 mins and come back with some antibiotics . Yes I will be prepared next time as you say not long before see them .I will say I have been so well treated by my Hospital with heart scan chest scans ect could not have received better treatment if I'd paid for it .I will keep you all informed I think sharing it helps me and helps others too
Kakariki, I am very pleased you now feel you have a better understanding of your condition and hope you will come back with further posts as you need to, and especially after you have seen your consultant again.
I have had to remove some comments on here which were not helpful to you, and I'm now going to turn off replies, so that the arguments cannot continue.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hi all I'm newbie. Anyone here have lung damage due to Amiodarone treatment?
Very scared
Help with confusing PFT results 
Saddened by skis & how I'm doing in general 
Scared newbie
