copd: in june this year i had a very bad time i... - Pain Concern

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copd

mason profile image
16 Replies

in june this year i had a very bad time i have had a letter from the hospital concernining my complaint after surgery where a new gastronamy peg was inserted just under my ribs i had severe pain under my ribs i was sent for an ex ray the next day and when i was discharged i asked about my exray i was not told i have just had a letter from the hospital stating that the ex ray had showed only some mild long term changes of chronic obstructive pulmonary disease copd i did not have COPD WHEN I WENT INTO THE HOSPITAL can any one advise i have written a long letter in gastronamy peg on this site i had a terrable time in hospital ,

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mason
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16 Replies

Hi Mason.

Didn't fully understand your post at first, so please bear with me if I've got this wrong.

Is it the finding of the mild COPD that you are most concerned about? It sounds like you had a terrible time in June when you had the peg fitted and suffered that horrendous pain. Now this letter has come out of the blue and reminded you of that dreadful time 3/4 months ago.

Mason, I just read your post & replies from 2 months ago. I am so shocked. I am also disturbed that you had to go to GP surgery and didn't have a District Nurse come out to you when you got home. But that's the way the NHS is going today.

About the mild COPD in the letter. The way hospitals word letters can be so confusing and upsetting. Don't suppose you remember the last time before June that you had a chest xray?

You have more than enough to deal with just now. Why don't you write out a copy of this post, get a copy of hospital letter and give them both to your solicitor. I would imagine you have already printed a copy of your post from 2 months ago for them?

Did you ever work in a place where there was asbestos or some other pollutant in the atmosphere?

🐥x

mason profile image
mason in reply to Mary-intussuception

hi mary i had a chest x ray in 2014 as i had a very bad cough given to me by my son i was then told i had lung cancer i was terrafied i did smoke but i stopped smoking that day also had a cat scan i have not smoked since and i was told last year that the nodes on my lungs have disapeared and i dont need to loose my lung .

mason profile image
mason

and i have not worked in any place where there was asbestos or pollution ,

Mary-intussuception profile image
Mary-intussuception in reply to mason

Hi Mason

I have just written a reply - and lost it! The phone rang (seldom does) managed to retrieve reply, almost finished, it rang again!

It's good news that you didn't have to lose a lung but what a shock to be told it was lung cancer. Now that you've given up smoking mild COPD shouldn't get any worse. Congratulations, by the way. I wish my husband could give up - he still smokes a few.

I'm not medically qualified and not sure what nodules meant on a chest xray. When my husband was in A&E years ago the doctor told him there was a white area low down on the left (and pointed out where). He also told my husband he had finger clubbing. When I looked these up I was concerned to eliminate cancer. But radiology reported COPD. One doctor said if was caused by smoking. No one did a CT. We found out this year after a CT scan for something else that it is actually Asbestosis.

So we were told COPD when a CT revealed Asbestosis. And it seems like what appeared on your xray like cancer in 2014 turned out to be possibly mild COPD ??

Considering what you went through in June and your subsequent complaint I think it's insensitive of the hospital to write to you like that. They could have written to your GP and asked him to call you in for a non-urgent appoinment to inform you the xray's incidental finding. Then you could have asked GP any questions and had xray fully explained.

Could it be possible that the person who wrote the letter doesn't know you gave up smoking years ago, so no action necessary, and maybe not even know what happened to you in June?

I hope you are successful with your complaint and it is settled quickly. Hope the hospital apologise, they should have already in my opinion.

Hope you get the area of your peg resolved too. It seems like your battles are not over yet.

Thinking of you xxx

Love

Mary 🐥

cyberbarn profile image
cyberbarn

I see from your replies that you stopped smoking when you had the scare and the x-ray. COPD is often asymptomatic, that means that you don't actually know you have it, but if you do, it doesn't go away. The best thing for stopping it from getting worse is to stop smoking, so you have done that. That is not an easy thing to do, so well done!

So it is possible that you did have mild asymtomatic COPD when you went into hospital. It is one of those things that as imagining gets better, they find more and more things that people didn't know they had because they are not producing any symptoms.

I know it must have come as a shock on top of everything else that they saw signs of mild COPD on the X-ray, but it is probably just one of those things that happens. At the time they weren't worried about COPD but what was causing your pain. Findings that are incidental to what they are looking for often are not reported at the time, as they are not important for the treatment of the patient, they get reported later on as routine.

Another thing that can happen is that x-rays are looked at again to see if there are any findings missed. This could also be why they have sent the letter now. Findings that are urgent are always deal with straight away, but findings that are 'interesting to know' might not be.

And this will be a good base line for you to have, so that you know what was going on in 2017. Then when you have different sets of symptoms in the future, they can compare the x-rays and see what has changed.

But you have already done the one thing that they recommend and the only thing that stops COPD from getting worse, and that is quitting smoking. So you are ahead of the game!

mason profile image
mason in reply to cyberbarn

hi cyberbarn i am now very worried as my mum had emphasema she smoked heavily all her life she stopped smoking it must be 40 years ago that was when she had to have a cataract operation and my dad died from cancer mum died in 2009 she had had neumonia and the hospital sent her home early mum got worse and went back into hospital where she went into a coma and died she was 88 .i miss her so much .

cyberbarn profile image
cyberbarn in reply to mason

I am sorry to hear about your parents have both died, it must be hard to not have them around now to support you. I can see why you miss your mum so much.

but just because your dad died from cancer it doesn't mean to say that you too have cancer. COPD isn't cancer, and pneumonia isn't cancer either. COPD is an umbrella term for more than one disease, but they all make breathing harder because of damage to the lungs. Many people with mild COPD will live long lives and will not die from that, but will die from something else.

It is hard not to worry, but worrying can make some symptoms worse. Is there someone that you can talk to about this from your surgery? Do you have a social prescriber or Wellbeing worker at your surgery that might be able to refer you to someone who could help?

mason profile image
mason in reply to cyberbarn

hi i have had a phone call from my surgery and i have an appointment to see the nurse next week to do some tests .take care .

mason profile image
mason in reply to cyberbarn

i have 2 adult sons my husband does not understand and he smokes i have many more disabilaties i dont get out much so i dont have anyone to talk to .

cyberbarn profile image
cyberbarn in reply to mason

That is why I wondered if there is a social prescriber or similar at your GP surgery. They can find people to support you. I hope that your appointment goes well with the nurse next week, and don't be afraid to ask for more non-medical support. Having someone to talk to can make a world of difference.

Neldine profile image
Neldine in reply to cyberbarn

Exactly right. Since infancy I had chronic bronchitis, suddenly a few years back it became (scary music) COPD 👹, sigh, it's the same old thing, but now it's all ominous and scary. Sigh.

mason profile image
mason in reply to cyberbarn

they have told me about the mild copd but not what was causing me to have so much pain under my ribs the new peg is actually touching my ribs and it is still sore ,

deejames profile image
deejames

COPD develops gradually over years and can often not have symptoms during that time . Stopping smoking was the best thing you could do which will have helped the progression of the disease. COPD doesn't have a cure but not smoking and not being around passive smoke wiLL stop it getting worse.

Discuss this diagnosis with your GP and ask what help / treatment will be most appropriate for you. There is lots of advice and information available online as well.

All the best

Dee

mason profile image
mason

hi deejames went to see the nurse yesterday to be tested for copd it seems i do have it but mild i am on inhalers as i was diagnosed with asthma years ago i have an underactive thyroid and while i was seeing the nurse she said i was due for a blood test i lost it i had a major panic attack i has hyperventalating the doctor had to give me a sedative to calm me it was the thought of the kneedle as i told u when i was in hospital the nurses held me down and tried to take blood from the main artery in my wrist i was screaming it just brought it all back i was crying and shaking they said i would have to have the blood test at some time but i just cant do it so freaked out just thinking about it i am breathless i will be seeing the physcolagist on the 6th of november i might ask him about hypnosis if that might help i am a mess .sorry ,

Neldine profile image
Neldine

Don't feel bad Mason. I still freak over needles. Had too many inoculations due to stepfather being in the navy, plus navy corpsman are the absolute worst when it comes to blood draws. That and my veins are nearly impossible to find. They've put warm clothes and all sorts of stuff to try and make them pop, ha, not a chance. Don't feel bad, but tell the phlebotomist ahead of time.

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