Diagnosis

[emiliedehli]

Hi everyone I was diagnosed with moderate level COPD about four years ago. I'm taking inhalers which do appear to help. My beef is that I don't know specifically what is wrong for example emphysema ? most of you guys appear to know so much about your conditions and diagnosis. should I be concerned? until now I think I haven't really wanted to know.

[Hidden]

Good Morning! My husband was diagnosed about ten ish years ago and for a long time was fine with his inhalers. We, like you, knew nothing about his illness etc and were not given any advise about keeping well etc. However he did get a very bad infection about five years ago and as a result ended up in hospital (actually a severe reaction to medication) - from then on I decided to find out as much as I could so that we could manage his condition better. I would suggest in the first place you contact BLF - they have a very good information pack.

I would recommend you ask your GP for a referral to a pulmonary rehab course which is a combination of fitness and information. I think it completely changed my husbands life - he was able to understand his illness, how to use his medications, when to use them and what to expect.

From personal experience it was a lot of asking and asking and asking again until I found the answers. Take good care and good luck TAD xx

[peege]

I second everything Tad says. I am 4-5 years in, been under a consultant for only a year. It's been a bit of a struggle getting information, taken seriously & getting meds right for me. I too was desperate to 'know what I had'.

However, after learning a lot here I'm much happier. With some knowledge & understanding you lose some of the fear & dread - which is of huge benefit in itself.

In fact what they came up with was uncontrolled ashma. I have seen COPD written inmy medical notes at the GPs but never actually told this.

The very best thing was getting a CT scan. I saw for myself the lung damage already present. At the appointment for the result of it the registrars words to me were "look, I'm shocked, I can hardly believe what I'm seeing". When I went white she said "no no, shocked in a good way. I was expecting to see a loads of holes but look, I'll show you". (I think 'lots of holes would have proved emphysema, as a non-smoker I'd have been pretty peeved) She showed me the scan & explained it all & finished with " a really good pair". I cant tell you the relief.

You get proper lung function tests and because my sputum tests had shown Aspergillosis I had skin prick tests. It was confirmed that I'm allergic to mould (not the dog or house dust mite) and Aspergillosis came up a bit but the blood test proved negative.

Sorry to drag on but years pass and are wasted when we could be improving our later quality of life by eating well, keeping a healthy weight and having the right meds for us.

We are all different, as Tad says, get the BLF info on the different COPD ailments then there is Bronchiectasis and others too.

PR (pulmonary Rehab) is brilliant, it was here I learnt that I'd been taking my daily preventive inhaler wrongly for over 3 years.

Most of us have learnt you have to be proactive in getting the right support. I'm lucky, I'm taking no chances though and now take lots of Vits & supplements (I research first & check with GP) to boost my immune system. This winter has proved to be my best for many years. Very glad I pulled my head out of the sand

Good luck and all the best. P

[emiliedehli in reply to peege]

Ha Ha Ha Head in Sand is Right ! but at last its lifted.

[O2Trees in reply to emiliedehli]

Follow what Peeg says re CT scan. It's the only way to get a clear diagnosis about exactly what is wrong. COPD is an umbrella term and not specific.

[silversurfer]

I am also only in the first stages of copd but I found the BLF nurses very helpful and informative. Give them a ring.

Bethan

[Hidden]

What great advice from all the above!

Can't add much,only to say welcome!

Love Wendells xx

[Steph57]

Ditto to all the above sometimes not knowing is worse. Just get to know your own limits as you go along. Try different methods till you find what suits you and ask any questions even if they seem silly it's the little things that makes a difference. Don't let it hold you back. X

[frank65]

i too have copd was never told what type all i was told that i had suspected copd sure i get breathless but there again i am 70 years young . i just take the meds and get on with life as best i can