What to expect After COPD Diagnosis

[Karenhskippy]

Can i ask uk COPD sufferers. When you were diagnosed did you see a specialist have blood tests? I've had a spirometry following a x ray that showed hyperinflation. I am taking Spiriva and fosair. Should I be asking for more tests?

[mrsmummy]

Lots of reading/information here while you are waiting for a reply. Welcome to the forum.

blf.org.uk/search/site/copd

[stone-UK]

Hi

Spirometer is the appropriate test for COPD, X-rays are to rule out any other cause. As you are on the appropriate medication there is probably no need for further test, especially if you have the condition under control. At what stage have you been diagnosed. As there been discussion on smoking, diet, exercise. Have you been given a management plan. A lot depends on our you are affected. Which In turns depends on which stage you are at.

[Phil40]

Hi, welcome to the forum.

As Mrs Mummy said, lots of very useful information and experience on this site.

Knowledge and understanding COPD is really important in looking after yourself best as possible.

Regards

Phil

[Badbessie]

I would advise at this point to see your GP and ask for pulmonary rehabilitation. It is not only exercise but education about your condition and medications. Most people feel a sense of anxiety on diagnosis. I thing to remember is that there are many things you can do yourself to help. Others have suggested changes in lifestyle like going up bad habits such as smoking. If you are over weight or under weight do something about it. These are very important. Perhaps the next best thing is to start exercise. Lastly there is no such thing as a daft question. I have already asked them. There are a number of breathing exercises that could help you with hyperinflation and other problems. There is lots on YouTube.

[Karenhskippy]

Thank you. I am active as I walk on average 12,000+ steps a day..have a puppy and kids are 10 & 12. My peak flow has improved since being on Spiriva & fostair. It's gone up from 300 to 400 and sometimes 450. My next spirometry is in 2 weeks. It is really cold today & I went out wearing my new balaclava to cover my mouth but by the time I came back from walk I felt like I was suffocating! I believe I'm in the category of mild but I do feel v breathless at times.

[Sjf129903 in reply to Karenhskippy]

Whenever I wear a mask I get short of breath due to breathing in warm air so for me i just use my hand

[MSMichaela1966 in reply to Karenhskippy]

Wow I am under 900 steps a day so your doing good. Keep that up 😁

[taffy52 in reply to Karenhskippy]

hi I'm the same out of breath with copd iv had copd now just few months I'm 53 ,,hope you get more info

[HummingbirdM]

When I was diagnosed I was given an inhaler and told you will probably die of something else that was some total of information I was given, it was only through the likes of HealthUnlocked and other sites I found out more about COPD and pulmonary rehabilitation.I changed my surgery the best thing I ever did im now with a wonderful surgery I am able to get a same day appointment if I think I have a chest infection, if only all surgeries were the same.

[O2Trees]

Since you have two youngish children Karen, Im assuming you are quite young. You should talk to your doctor about getting a blood test to rule out A1A - Alph-1 Antitrypsin which is an inherited disorder which causes copd symptoms. It can sometimes explain why younger people get copd.

[Karenhskippy in reply to O2Trees]

Well the chemist says I'm not young but at 45 I think I am. 😉

[O2Trees in reply to Karenhskippy]

All relative isn't it Karen, and you are quite young for a new diagnosis. I had the A1A blood test around 58, diagnosed at 55. It's a good idea to ask for it.

[patmc1]

Hi (I'm in the States, and 4 months diagnosed). I would have a few blood tests done. -Although my CT and spirometry tests (and the 6 minute walk) confirmed my COPD(emphysema) My blood work showed I had one allele for the alpha1 deficiency (making my 15 years of smoking 60% more harmful--I quit 22 years ago) and more important I had an IGE level of 1600(normal high 100). That along with my fast improvement with Breo led to an additional diagnosis of mild COPD and moderate/asthma ---. And that does result in a slight difference in meds and understanding.

So I agree you are young ---and you should rule out Alpha 1 . (I'll take your young 45 and trade you an aged 65)

[1buzzytruk]

Hi........I was diagnosed by a since retired gp. after spyro and chest x-ray , which was followed by a referral to a chest consultant a couple of weeks later. ........duely turned up for apt feeling rather anxious.

The consultant never looked at me , he held up my x-ray , and announced I had copd.

His next word was discharge.....that was eight years ago .. From then on I have been on my own. Yes I have seen a useless chest nurse for antibiotics.......I had six lots of antibiotics & steroids over a six month period . No x-ray ,no sputum test. No pul rehab .......Quite by chance I recently met a community physio. Wonderful woman , and things have changed.😁

Forgot to say .......have changed my GP......and things are really looking up.

Jo.

[Phil40 in reply to 1buzzytruk]

Hi, I care for Mum with COPD; very similar experiences with consultants etc., and was a nurse at Pulminary Rehab who told me how bad Mums care plan was and what to ask at the GP.

The consultant last May said to Mum on the first visit that he probably wouldn’t see her again (implication; because she would die) but would leave her on his books but just got an appointment to see him again in March so shows what he knows the miserable old twit.

But didn’t change GP; instead put in Subject Access Request for all her notes officially from the surgery. (See Information Commissioners website; very easy and cost £15.)

A litany of incompetence revealed in the notes and the surgery realised that someone knew what was in there and Mum has not had any problems with the GP since then!

Phil

[audrey2543]

Can't praise too highly the benefit of pulmonary rehab run by Physios. They seem to know much more about effective medicines, inhalers and the value of breath control and exercise than some GPs and even some chest consultants. Only needs a GP referral.

[Karenhskippy in reply to audrey2543]

I will definitely ask about this. Thank u

[hopetorun]

Hello and welcome.

I was diagnosed at 27 but have had fairly brittle asthma since the age of 2. Now at 58 still going strong and still fighting to stay well. Try and stay positive. This winter has been challenging to me. Take care and keep warm. X

[Ergendl]

I was diagnosed with moderate COPD at the surgery by the respiratory nurse three years ago, and haven't seen a consultant yet. I did the pulmonary rehab course which was very helpful. I believe I could ask to see a consultant, but as things have remained stable and I can do most things I want to, I'm not asking for that at the moment.

[sukee52 in reply to Ergendl]

I had my original diagnosis 49 years ago, but only in the last four had regular reviews. Just wondering why things are changing, I will let you know. Thank you for you reply

[Phil40]

Hi again, it was a great nurse at Pulminary Rehabilitation that immediately saw that my Mum had been shockingly given no care (apart from being left with an oxygen concentrator; a prescribed medicine; with no one monitoring her or having explained how to use it) and told me what to go to her GP and ask for!

She was fab and validated my sense that Mum had and was being treated so badly but I couldn’t believe HOW badly!!

Took a while after that but finally got all the appropriate care she needs!

Regards

Phil