Finally CT Scan Results .. Enough To Make You Hyperventilate.

Past Few Years I have been fighting lung doctors gp's "not literally " to find out what is going on with my lung disease.

Well ever since a un-sympathetic GP blurted out O your one with cancer.

I had not even sat down I might ad .. but un-sympathetic consultation was FOLLOWING results of XRay at A&E for breathing trouble and that's where it all begins.

Where A&E a doctor asked about occupation and asbestos given my xray breathing trouble.

Only things I have ever been told I have is emphysema centrilobular & parseptal & bullea and also bronchitiasas all smoking related.

Now I never started smoking till my mid 20.s .. So this is where my argument is as my occupation and heavy asbestos asbestos cement exposer as been omitted disregarded despite asbestos material I have been coughing up.

Also I have never been told I have ever had tb or fungus infection's

But having looked at my scan results SURE infections can cause lot of thing BUT so can ASBESTOS or PNEUMOCONIOSIS or occupational lung disease.

But like firemen mine workers cement workers O and even asbestos workers just like today ITs all Smoking related.

WELL I say people like me and what ever class you are do get sick AND jobs do and can make you ill AND medical profession need to get over this it's all about smoking as it's not Environment Occupation ... all play there part BUT to quickly dismissed.

Here are my results YOU decide if I have just cause to be bitter given what I have been told ABOUT my condition and NOT told.

.......................................................................................................................

Unchanged : emphysema centrilobular & parseptal particularly within upper lobes.

There is a Oval Elongated subfissural 8mm Nodule on the cranial aspect of the oblique fissure on the right.

Calcerfied right upper lobe Granuloma.

Centrilobular Nodularity within the upper lobes

Simple Liver cyst

[jenss]

Congratulations! Seems like your lung condition is thankfully confined to the upper lobes only and also is stable with seemingly no further deterioration. Also, no nasties like cancer, asbestosis, fibrosis, thickening etc. identified which is very reassuring. Relax and get on with lifexxx

[Hidden in reply to jenss]

Hi Jenss I wish that was the case BUT scan don't talk about barrel chest or rib thickening nor stomach.

Can't really understand why a pelvis abdomen thorax scan dose not cover stomach.

Anyway am undergoing scan again to see if that Oval Elongated subfissural 8mm Nodule on the cranial aspect of the oblique fissure on the right is anything to worry about

Needless to say am hoping it's nout SEEM to have more faith than my lung doctor BUT am hoping it's nothing just lynthatic stuff IF it's not be most certainly down to asbestos.

Cheers thanks for reply

[rubyred777]

Hi Jeff

Not understanding that ct scan. Could you explain what I'm looking at?

Rubyxx 😊

[velvet55 in reply to rubyred777]

Hi Ruby

The pictures are not the scan, it's a photo taken down his Microscope

x

[rubyred777 in reply to velvet55]

Thanks Velvet.😊

[Hidden in reply to rubyred777]

Hi Rubyred777

Picture is of what I believe to be asbestos causes of my issues .. My doctors have such hard time excepting THEY should try coughing asbestos up.

Think they would be quick to change the opinions

[sassy59]

You do seem to have got some results now though and yes it is probably worl related but not many docs want to know about that. Try and stay as well as you can.

Pete knows all about granulomas with his sarcoidosis but generally does ok.

Take care. Xxx

[Hidden in reply to sassy59]

Hi Sassy59 Hope you and Pete are doing well .. First I ever heard of all this but did come from liver gi doc and not my lung doctors.

Guess that say's enough really.

Cheers thanks for reply

[sassy59 in reply to Hidden]

We are doing ok thanks JAS and wish you well, Xxx

[inhaler1]

I bet this is the one time you were actually relieved to get the results.

I hope your condition can now be better managed.

[Hidden in reply to inhaler1]

Hi Can do nout but wish .. My lung doctor is not optimistic as already said they have done all the can WHAT ever that means ... Where as me am still waiting for them to.

Cheers thanks.

[Offcut]

Sounds like my surgery. I have been told possible fibrosis by every non GP Doctor I have seen for many many years. But this year they have admitted it is Fibrosis and Emphysema. They have even done more blood tests to get a better understanding of my heart problems. Which is another first as they would not deal with more than one condition at a time before?

PMA

Be Well

[Hidden in reply to Offcut]

I have found doctors don't like awkward questions let alone answering them .. Am thinking that to AM just waiting for them to say I have advancing plumary fibrosis too ... Sure the wait till it's to late to do out BUT your right about heart issues.

My lung doc as said he don't deal with heart stuff I need to see gp and get referd if I have issues ... Like really what the like LUNGs HEART is connected in my opinion.

Thanks for reply an hope ya doing as well given issues .. O and don't forget don't be doing to much.

[Billiejean_2 in reply to Hidden]

Pulmonary fibrosis is clearly evident on simple X-rays so if the CT scan doesn't mention it then obviously you haven't got it. One less thing to worry about so that's good news.

[Hidden in reply to Billiejean_2]

Centrilobular Nodularity within the upper lobes is what I believe to be pulmonary fibrosis caused by asbestos cement I.e silica

[jenss in reply to Hidden]

Hi, to put your mind at ease: even if the nodularity in the upper lobe is pulmonary fibrosis it is very unlikely that it is caused by inhaling asbestos fibres. Opacities, thickening and fibrosis at the lung BASIS are interpreted as indications of asbestosis not nodularity within the UPPER lobes. I think your drs know all this and as there is no clinical or medical evidence of asbestosis they are not agreeing to your suggestions of this diagnosis. I think at this stage the CT scan shows unchanged and relatively undamaged lungs. The fact that you get symptoms such as infections, pain in your legs etc has to have other causes: an example could be poor immune system. By the way, have you had your Vit D level tested? Both immune system and bone pain can be caused by low Vit D. As several of us have been trying to say: try to move on from this asbestosis thing (currently there is no evidence that you have that), relax, do something positive for your health etc. I wish you well.xx

[Hidden in reply to jenss]

Hi Jenns like I said to my lung doctor if I had been coughing up bits of peanuts or mashed spuds I would not be going on.

As we have seen time and time again most people don't wake up with asbestosis this stage of inflamation related to fibers inhalation

As my previous post went into detail re asbestos deficiency cell proteins.

As them processes could indeed explain my vanishing vitamin D and vanishing Igm antibodies given antibodies trying to desolve fibres I have been coughing up

[jenss in reply to Hidden]

Hi these micrographs you are showing are not asbestos fibres you could have coughed up (unless you have eaten them). It is impossible to breathe fibers of the size that are depicted into lungs. Asbestos fibres that can be breathed in are submicron scale and cannot be seen. The needle in your micrographs gives as sense of scale showing that these fibres are 10s of cms long and about 1/10 to 1/100 of a mm thick (a bit like sewing yarn). But to put your worries to bed follow the suggestion and get some of these coughed up fibres analysed to find out what they are. I wish you well.

[Hidden in reply to jenss]

Hi Jenns like I have said you need to read my previous post.

As much as I would like to agree about asbestos you are quite wrong about inhalation of asbestos.

Those fibres are white asbestos and the do role about your lungs.

Sure I have shown my doctors but they put it down to mean age lung disease and then I have lost samples like previous ones.

As to size you could say it was 1/4 size of a mucus lung ball expect that was white when that was coughed up.

If it was dislodged by nodule or emphysema or my nebuliser guess that would be anyone's idea.

As to eating asbestos judge did say at IIDB hearing bread is worse for that as asbestos falls of commercial ovens when the cooking bread.

[Billiejean_2 in reply to Hidden]

I don't think you need to worry about that. Pulmonary Fibrosis is scarring of the lungs and quite easy to spot. If your lungs showed as small, with lots of white areas then it would be obvious you had some fibrosis. In CT terms, black is good and white is bad. I learned this in a pretty devastating way last December when my X ray was shown to me. The X-ray had one lung showing and where the other one should be was just hazy white. This means my left lung is shot to hell and I now have to depend on the right one. I haven't got Pulmonary Fibrosis as a diagnosis. The fibrosis that has devoured my left lung was caused by years of scarring. So don't wish this on yourself Daz because if there's any fibrosis there, you would be told.

[onamission]

I can't understand why these Doctors have a problem with diagnosing asbestos all you want is to be treated my mom worked in buildings made with asbestos roof I'm sure her lung condition had something to do with this.

[Hidden in reply to onamission]

Hi Onamission They have done there deals with government re asbestos in hospitals and there compensation.

Guess others down chain can whistle .. Well that's what am lead to believe by my own actions findings.

[onamission in reply to Hidden]

That's disgusting I know where mom worked they had a big fire asbestos went for miles and a girl I went to shook with died last year through this. A firm of solicitors took up the case and was fighting for compensation

[velvet55 in reply to Hidden]

Do you think you have mesothelioma.?

My friend died of this disease 2 years ago, he worked 30 years ago in a school laboratory.

The docs picked up signs of this disease from a CT scan and blood tests....they then done further tests to confirm it.

Sadly he passed away.

His wife had no problem getting compensation for his loss.

[Offcut in reply to velvet55]

I was asked all of the time in 2008 did I work with asbestos as they could not understand the damage to my lungs? But I wrongly said no it was not the blue asbestos but later found it was the brown Asbestos I was cutting up for over 10 years! It was a little later they bought in the compensation scheme and I cannot get anyone to talk to me about it now?

[Hidden in reply to velvet55]

hi velvet, sadly its a case of were you got the asbestos from, if its not known were theres no payments, there riping old skools down and building new academys on the old sites plus lots of old work places so years down the line theres no evidence to say when you get meso were you got it from,or any othere asbestos related disese , there will be many more dieing of lung related disese in years to come as asbestos takes its time ,but in saying that theres cases now of 34 yr olds dead and 40 yrs old what have died of meso, or a asbestos related death, so me smoking is not good but its not the primary cause sometimes,

[velvet55 in reply to Hidden]

Hi TisBAme

I agree with you over the difficultly in proving exposure to Asbestos.

I think my reply didn't quite get over the point l was trying to make to Jeff.

My late friend's Asbestos related disease, was diagnosed within months of him telling the docs he worked with Asbestos years ago.

His wife managed to prove where he was exposed to it.

There was no ' government deal ' denying proven cases compensation as was suggested earlier.

Despite scan results, Jeff still seems convinced this is what he has.

Like someone else suggested on here, next time he coughs fibre up , he should give it the medics for testing.

It should tell him exactly what they are, thus avoiding him any more worry.

Velvet x

[jenss in reply to velvet55]

I agree Velvet: there is no deal that dr abide by. If they think someone has symptoms of asbestosis or other asbestos related disease that will investigate and diagnose. That is their job and anything else would be unethical.

[Billiejean_2]

A very good result. No change in the Emphysema which means your lungs haven't deteriorated since the last scan.

Seriously Daz, if you want to read a CT report that would scare the living daylights out of you, I'll send you one of mine, where the findings take up a good half page and where new deterioration is spotted every time.

I understand your desire to find proof that your condition is caused by Asbestos but maybe at this stage, there's no way proof can be found either by CT or X-ray. If this is so then it will be like banging your head off a brick wall and drive you nuts.

You know we talk a lot here about Positive Mental Attitude and how it helps people rather then endlessly going over the facts of your illness in your mind. Maybe if you tried to stop worrying and obsessing so much about all this, your condition might even improve. I thing this because if you were to use all the energy you put into this asbestos proof in a positive way, it could only be helpful to you.

[Hidden in reply to Billiejean_2]

Hi ad not call it obsessing trying to find out understand what is up going on with me given my infection rate.

As far as being agrived yer sure I am like you say I should be out enjoying my self but like most lung disease surfers that just don't happen.

[velvet55 in reply to Hidden]

You have had some excellent replies, try to gain something positive from them.

Also, many lung disease suffers still manage to get out and enjoy themselves

[Billiejean_2 in reply to Hidden]

You have to make it happen. When your breathing and infection is not too bad, then get out and about to somewhere you like going. If you have a car yourself or have a mate with a car, on the days that your breathing's not so great, take a drive and stop somewhere for a coffee or a drink. That involves no strain on your lungs and a change of scenery makes us all feel better. It's not likely that any of us will be out clubbing but the simplest thing, like taking a bus ride across town, or making it to the supermarket or a movie, cheers us up for sure.

[mmzetor in reply to Billiejean_2]

very good reply bj we have to make the best of everyday for as long as we can ,

[Billiejean_2 in reply to mmzetor]

Thank you MM. I'm trying to stop obsessing about my condition every minute of every day. I've finally realised that it is what it is and what I should be doing is enjoying life as much as possible, not panicking at every new infection and bug. Like yourself, I enjoy a laugh and try to keep my illness from casting a shadow over my home and family. It's either that or settle down to being an invaliad and I'm so not ready for that.

[mmzetor in reply to Billiejean_2]

you right there , we got the lung diseases how we got them isn't going to make much difference , fact is we have it and how every much we worry only makes things worse , we have to learn to live with it and make some changes to make life easier some are only small things but make a big difference to how we manage every day living , I still enjoy a night out in our nearest town I cant dance but never did and makes you feel like your getting old when you look round and 3/4 of them are same age as our kids lol but its a night out and gets you out the house ,

[Snodgrass in reply to Hidden]

Sadly although you have obviously done a lot or research you do not have medical training and the amount of time and effort you are putting into proving yourself right isn't doing you any good. Concentrate on yourself now, diet, exercise and living each day as it comes not stressing yourself, and try and accept your limitations.

[moocow66]

Hi I have advanced Asbestosis and it's causing me lots of heart problems but feel delighted to have just won a appeal against DWP because of my condition asked for a rise in industrial diseases and got 5% appealed against it and got another 45% back dated 16months so sending for lots more canvases and oil paints and water colours to keep me busy and it stops me getting black moods and I love painting our walls are covered in my paintings.

[mmzetor in reply to moocow66]

well done glad you got the money owing to you good result there ,

[Dragonmum]

That's great moocow - hope you enjoy spending every penny of it; it's lovely when things are back-dated, like Santa paid a visit. To Jeff I would say that you are so much more than your condition so use everything you have - I always think that any of us could fall under a bus any time, so let's enjoy the here and now as far as possible.

[scorpiolass]

Hi Daz, I am sorry to hear you have not resolved your problems with your diagnosis. I can see coughing up this stuff would be painful & exhausting. You are convinced it is asbestos but could it be something else?

I am sorry to ask what might be an incredibly daft question but I wonder, have you coughed these into a sputum pot to have them analysed? If not can you arrange to have this done?

I agree with others that advise you to try & live a positive a life as possible. I do know it isn't easy but how does your condition limit you? Can you walk in the park or if not that mobile; can someone walk with you in a wheelchair? I remember you used to meet with mates in the pub; do you not go now? I have commented before about your originality & hunger for knowlege. Is there something else you can investigate, like family history, I don't know; maybe somthing that you could use the microscope for. Yes, lung disease is a B....r & I think all of us at sometime will feel anxious, down, angry, any number of difficult emotions but there are still things we can enjoy.

I don't like to hear you getting so upset.

Take Care

Margaret

[Hidden in reply to scorpiolass]

Hi Scorpiolass

I dont go out very much always feverish is effort to try these days plus guts dont help.

My lung doctor as said is to dagerious to put camera into lung BUT unfortunately i dont always cough stuff up like that.

The lung noises i have made have been allsorts even effcts my breathing when bits like that on move THATs with out you feeling em sticking in you guess thats why i get feverish and immunty worn down.

Becouse know one talkes about breathless whisling crackling sounds and pain with regard asbestos do thay really know unless suffer.

Am pretty sure is as i have seen with my microscope proteins cells on fibers

Quite asbestos pacific that process.

As to staying positive am positive .. Just find it all intresting.

But like a say unless people talk about there symtoms nothing will inprove change for suffers and will be to late by time had DX and they will still be denighed justice.

[kitt]

I'm sorry that your doctor spoke like that to you, I really think some of them shouldn't be allowed near a patient. I hope you reported him, anyway l hope you're feeling better