I was diagnosed with severe COPD a year ago.

[Kad21]

I was referred to a specialist who was terrible, and then to another who was lovely, but he talked me through the illness, checked my meds then told me to come back and see him when I retire? effectively signed me off??? I am so confused, dont we need to be monitored or do I just wait for a flare up and hope for the best?

[Hidden]

That is terrible Kad21. Terrible that you have been diagnosed with severe COPD and terrible that you have effectively been told to go away for the time being. This is what I think should be happening.

1. You should be monitored at least twice a year by a copd nurse at your surgery

2. You should be given appropriate medicine ie various inhalers

3. You should be in regular contact with a specialist

4. You should had had a chest x-ray and maybe a ct scan

5. You should be referred to PR (Pulmunory Rehabilitation)

6. You should be given an emergency pack of steroids and antibiotics in case of flare ups when you are unable to get to the surgery.

There are probably some I have left out because I am not severe only mild/moderate COPD, There will be others in soon who are severe who will be able to give you more advice.

Come in anytime and seek support or ask questions or whatever. We all understand about lung disease here. Let us know how you get on please. xx

[O2Trees in reply to Hidden]

Very concise and helpful list coughalot - the blf mods should pin it

[Hidden in reply to O2Trees]

Why thank you O2. x

[Puffthemagicdragon in reply to Hidden]

I'm very severe but it looks like you've covered everything. I assume a proper lung function test would have been done if all these points were active.

[BRIANB123 in reply to Puffthemagicdragon]

COULD YOU PLEASE EXPLAIN SEVERE COPD

[Puffthemagicdragon in reply to BRIANB123]

Here's a guide of the levels.

copd-international.com/libr...

This one is a bit more informed.

webmd.com/lung/copd/gold-cr...

[Hidden in reply to Puffthemagicdragon]

Good links Puff. Thanks

[Puffthemagicdragon in reply to Hidden]

[BRIANB123 in reply to Puffthemagicdragon]

Hi,can anyone explain this for me?FEV1.1.22 46% severe CAPT(32) NEW TO COPD

[Puffthemagicdragon in reply to BRIANB123]

I hope this helps. It's the stages of COPD.

National Institute for Health and Care Excellence (NICE) classification of the severity of COPD:

Stage 1 - mild: 80% or above (symptoms should be present to diagnose COPD in people with mild airflow obstruction).

Stage 2 - moderate: 50-79%.

Stage 3 - severe: 30-49%.

Stage 4 - very severe: below 30% (or FEV1 less than 50% but with respiratory failure).

[Lyn45 in reply to Hidden]

Im so cross that you have been treated like this,change your hospital and doctor that's important and it's your life,you were given a list by anther person it's right what they say you may also need a nebulizer and I should think some support best of luck

[Offcut in reply to Hidden]

Great list

[Kad21]

I do have meds coughalot, and I was referred to Pulmunory rehab, but the nurse basically told me I was not 'ill' enough yet, I had a CT scan which is how I was diagnosed with severe COPD and referred to the specialist who also seems to think I am not 'ill' enough! DOes anyone else manage their own illness? I am going to the doctor on Friday for a flu jab, and will ask him about rescue meds.

[peege in reply to Kad21]

would you ask again - no demand - to be referred for PR Kad.

I'm mild/moderate with asthma and did it last summer my respiratory nurse from GP practise referred me but the lovely registrar (in place of horrible cons who I refused to see) I was seeing also gave me a referral.

I too have been discharged now and left to my own devices.

Almost a relief really because I plan to ensure next time I need to see a specialist I will choose which one & where.

At least now after learning information here and doing PR I can attempt to manage my condition. . . mind you, it's taken 5 years of suffering to get here.

Good luck in being assertive and getting what you need. Peeg

edit: I see respiratory nurse twice a year, she's better than GP anyway

[helingmic in reply to peege]

How do you choose your consultant, please. This would be interesting for all of us to know, thanks Peeg, Mike.

[helingmic in reply to Kad21]

I certainly don't manage my own illness. what if you get an infection? Monitoring is important and ongoing. I'm supposed to see a consultant every 4 or 6 month, but very often I fall ill and go to hospital. I am followed up by the pulmonary nurse team. the nurse saw me two weeks ago and told me, if you have a problem or are unsure about anything, don't hesitate to contact me.

This is the type of service that I receive and that YOU are entitled to have.

Was it your GP who saw you or were you refer to a consultant? Can you have a second opinion doctor to see you and interpret your scan again?

Ask the BLF helpline 03000 030 555 between 10 am and 1 weekdays to ask what you could do; they will direct you to the best way of going about it.

[peege in reply to helingmic]

well said Mike.

I read here once that you can self refer - whatever that means.

I've a friend who's a professor of medicine (cancer not lungs) he did some researchfor me & gave me a name at the Royal Brompton.

If I get worse I shall insist.

I've always meant o put up a question on what exactly self referal is Mike.

Hope you're doing okay xxx

[coastal1 in reply to peege]

Hi Peeg , Don't think you can actually self refer. As you mentioned earlier you can choose which doctor and hospital you go to but am pretty sure it still has to go through your GP. Vaguely remember a previous post about someone going "private" and even that had to be done through GP.

I think if you have already been on one PR course you can refer yourself for

another .

However not totally sure. ( might vary from one place to another.) Cheers Coastal

[Hidden]

We are supposed to manage this illness in partnership with medics i believe .... that is now my experience and i see consultant third time soon...ask doc to try me with different meds to see what's most effective. .latest is sputum sample bottles at home that i take in if it looks like chest infection. Doc and consultant have made sure all manner of tests arranged including bone heart diabetes etc ....ruling out all other problems thankfully . Ask for more ...that's how I got more . Once you have established relationship with medics and trust each other it's so much better. Hope you have as food treatment as I do in future. X

[Sohara]

Hi Kad

This does sound a little 'odd' Can you tell us, what symptoms do you have?

Are you just short of breath or do you also have lots of chest infections?

I suppose it is possible, that you got the 'severe' COPD diagnoses but in fact you are not really that bad yet ( which is great news)....have you had a spirometry reading? if so do you know what it was?

[Kad21 in reply to Sohara]

FVC 80%

FEV1 48%

FEV1/FVC 59%

[barney12]

your consultant should have worked out what we call a rescue package to use alongside with your GP this includes some antibiotics, steroids and when and where to up the preventer's this is usually done at your GP with the respiratory nurse if you have not seen either yet ask it could be that the report from the hospital was more favorable than you thought. Yes you will get those breathless morning when you feel you are coughing your guts up but this does not mean your COPD is getting worse sorry to say it is par for the course the longer you can stay of any rescue package or O2 intervention the better it will be for you in the long run.

[Hidden]

Who referred you to the specialist Kad? If it was your GP,the reports would go to him,& he will probably tell you when to see him again( specialist) your referral lasts 12 months.

I'm not sure if you are still in OZ,or did you get back to Yorkshire? I recall you thinking of returning.

Anyway,do hope things get better for you,love Wendells xxx

[Kad21 in reply to Hidden]

Hi Wendells. I am still in Oz, trying to work through our problems, but it is not easy xx

[Hidden in reply to Kad21]

Im sorry that it's still not easy for you Kad,

I do recall your circumstances,& have often wondered how it worked out for you.You can only try your best,but it does take 2 to tango! Take care of your self,& don't get too down!

Hugs & love to you,Wendells xxx

[Offcut]

I have RLD, PF and PAH as well as a heart problem and they have more or less been told me that there is not a lot they can do "live with it?"

One of the problems is that a lot of conditions are called Chronic which is a lose term for long term. Every one of us deal with our conditions in so many different ways. We all have bad days/weeks and good ones. I push my limits and sometimes regret it.

What your doctors consultants do not see is that most of the time we are in front of them we are putting on "A Front", as we have got used to the pain or control it better. We do what we know we can do, not what we used to do. What they do not see is what we want to do and cannot. They do not see our frustrations or concerns or those on the outside watching a different person they once knew.

P M A

Be Well

[Offcut]

I accept that I am not going to get better but all I ever wanted was honest answers not opinions.

[Jake364]

First go to the surgery and say that you need. New doctor or nurse you should really talk to your GP flare ups can be dangerous see your GP ASAP