any guesses at what level my copd is at.

[Paleghost]

Question, as of yet I have not been told at what level my c.o.p.d condition is, two years ago I was coughing –wheezing and breathless, I went to the doctors explained and was told to give up smoking before (she) would consider helping me, I gave up smoking, after 3 months I stopped coughing and wheezing, and was able to get my breath back more quickly, I was sent for a x ray the result was scar damage on the lungs due to having pneumonia as a child, no mention of c.o.p.d was mentioned and I had never heard of it anyway, I was given inhalers, and thought nothing else of it, three weeks ago I started getting really breathless, more than normally, so bad I thought I was never going to get my breath back, went back to the doctors, HE( not the lady doctor give her up) then told me I had c.o.p d. and explained it cannot be cured only helped, that I now understand from looking on the internet, at present I am on steroids for one week, in two weeks I am to go back to the doctors to see if there is any improvement, that’s my story so far;

[airlite]

When you get your next spyrometry test, ask whoever is doing it what level you are at. I had one last week and told I am now level 4 bordering on 5, I was diagnosed 9 yrs ago. They can tell you when the test is complete as they have a chart to work from. Hope this helps.

[Paleghost in reply to airlite]

yes I most certainly will thank you my friend,

[zaney in reply to airlite]

airlite , I am confused by your level as i thought there were only 4 levels , what is your fev1 % ? to put you on 4 bordering 5 ? .

[airlite in reply to zaney]

What I was told is level 4 is the highest but when it gets there and breathing is very bad then it,s oxygen time. I am fighting this off as I do not want to be reliant on oxygen . level 4/5 is a thing my surgery uses as a base for that .currently I,m on Seretide 500, Spiriva, and Ventolin but am now finding the Seretide 500 is being used more than twice daily so am waaiting for a review.

[O2Trees]

You don't mention spirometry Paleghost - have you had spirometry and other lung function tests? Maybe Im missing something, but Im not clear without it how your doctor can know you have copd as breathlessness can be caused by many things. Attitude of your first doc was appalling, glad you're not with her now but also glad to hear you've given up smoking. airline is right, spirometry will tell you what stage copd has reached.

I'd advise calling the BLF helpline - click on red balloon top right of this page for number - they are really good at talking to people and explaining all the relevant stuff.

Take care

[Paleghost in reply to O2Trees]

Thank you for your reply ,About 6 months ago I had that breath test at the doctors, all they told me was it confirms I have copd and they changed my inhaler for a fostair 100/6 micrograms per actuation, also have the ventelin through the day, to be honest none of them seem to be of any help, I will contact my doctor and ask for more information, I think worry and anxiety are adding to my breathing problems I must admit I am totally stressed out at the moment and I don’t think Im getting the right help from my doctors, through ignorance I ask no questions therefore they give no answers ;

[peege in reply to Paleghost]

I'm i bit worried that you have Ventolin through the day. How often? I think (I'm no medic) that we're not supposed to use it more than 8 times a day. If you're having to use it a lot as a 'reliever' then perhaps the other 'preventive' inhaler isn't the right dose.

I know if I over use my blue one I get shakes and anxious, a bit like having drunk 4 espressos.

If I were you, I'd ring BLF helpline for advice on Monday. Cost of a local call, 03000 030 555

All the best

[peege]

Until you see or speak to a specialist, If you look up Stitch's post of a few days ago, she put up the link to the NICE guidelines to copd. It might be useful to compare your symptoms. P

ps if your present symptoms worsen do go back before two weeks are up, you may develop an infection needing antibiotics too.

[Paleghost in reply to peege]

Thank you, yes I agree I need to see a specialist I am getting confusion from my doctor

[peege in reply to Paleghost]

By the way, my GP had put copd on my medical records but hospital has (after 4 visits & tests) diagnosed poorly controlled asthma. My lovely GPs were also convinced I had bronchiectasis or Aspergilosis. So I'm pleased, especially on my new regime of meds plus my own of boosting my immune system to avoid bugs..... Good luck, P

[Paleghost in reply to peege]

Just being on here less than 48 hours, I have learnt more about my condition than my doctor as told me in 2 years with the help of my new found friends, I Thank You All.

Through a copd health line, I believe I have found what stage I am at, that being stage 3, but I am not coughing or wheezing so possibly in between 2 and 3 my breathing is bad at the moment worse than it as ever been;I will see my doctor and ask to see a specialist,kind regards Stephen;

[peege in reply to Paleghost]

Hi Stephen, I'm really glad you're learning stuff, it's great isn't it.

I am concerned though that you have an infection and that's why your breathing has deteriorated at present. Best if you can see a GP, ask for an emergency appt for a GP to give your chest a quick listen, that's what I do, they can't refuse if you have copd. There are all sorts of squeaks, crackles & wheezes that tell them what's going on in there.

Good luck, P

[Offcut]

I have had similar problem to get any answers it seems in my area it is a policy to keep you in the dark. I have had a Spiro at the doctors after many years of fighting for my lungs to be looked at including my cardiologist who was concerned over my breathing. The nurse point blank turned me down to give me results on the graph. My doctor told me I have Restrictive Lung Disease and gave me Water Tablets? with the result of me popping off to the loo loads and feeling like I had been kicked in the kidneys and the breathing no better. Doctor took me off them and got me a Lung consultant appointment. Much more of a detailed Lung function test And once more all I got from the Nurse was you are low! I was given a sleep monitor to see if I had Sleep Apnoea as I wake up gasping some nights (always broken sleep) But the tests took it out of me and I fell asleep on the sofa and did not got to bed until the early hours of the morning and then could not sleep so the test was a waste of time

I am seeing consultant on the 27th for results so hopefully I will know more then?

Be Well

[Paleghost in reply to Offcut]

we must live in the same area god forbid we have the same doctors, without answers we cant find solutions, when I take my dog the vets I get more answers than are needed, maybe we should be diagnosed by our local vet, Good luck 0n the 27 my friend;

[Mgharris01]

I used to be on Seretide, but have been taken off that and now take Symbicort, Artovent & Ventolin inhalers, Montelukast tablets and have Ventolin on standby with my Nebuliser. I seem to have sessions where I am under the consultant at hospital, then get released back to GP care for a while, then back under Consultant care. I have now changed work roles so I work from home. Every few weeks I have another chest infection where I end up on antibiotics and steroids. Sorry for the moan but I get so frustrated.

[helingmic]

have you got a proper lung consultant? have you been referred to a pulmonary nurse team? These two are vital for you to get to know about what's wrong with your lungs and how to get by and improve your breathing. More on all this later. Get yourself a consultant that refers you to a pulmonary nurse!

[onamission]

Hi Paleghost like you I went to my GP ten years ago he said I had COPD hear is an inhaler go away and stop smoking would you believe he was being paid £100,000 pa for that. 8 years have past never told what level I am had tests every year I changed my GP had a test and was told I was level 3 my last test 12 months on I'm told I'm level 4 just ask the nurse after the test.

[Paleghost]

Update from the last time I was logged on, went to the doctors explained my breathlessness, I was put on prednisone 5mg 4 a day for seven days, ten days later back to the doctors feeling slightly better, he explained my lungs were inflamed not infection, now on prednisone 5mg 6 a day for a week then 5 a day for a week and so on until I stop taking them, I can’t believe how much I have bloated up, DON’T LIKE THE FEELING OR THE WEIGHT GAIN booked in for a breath test Wednesday next week, then I hope to find out what level my COPD is at;