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newly diagnosed with copd

Mytabby profile image
40 Replies

hi

I’m 67, female, as long as I can remember I get a cough after any cold virus, fatigue lasting a few weeks. I approached my GP a year ago as I was getting breathless during walking. I’m about a stone overweight. GP did chest X-ray, blood tests & ECG, all was ok. Fast forward to November I was having a review of my BP MEDS as my BP was slightly too low & I was getting swollen ankles. This GP suggested I have a Spirometry as mentioned the ongoing breathlessness. The nurse said it seemed to show a blockage & to wait to hear next steps. I went down with this wretched virus on 20/12, contacted GP who wanted to see me in person. He said the spirometry showed COPD & to use the blue reliever inhaler & to make an appointment with COPD nurse for review once I’m back on my feet. Hideous virus, coughing till retching etc. Have only just got a bit better last week, attended Yoga , gym, hair appointment & podiatrist. Now last night I started streaming nose, unable to breathe through nose, loss of taste, poor sleep. I’m now feeling low & dreading going back to where I started in December. I would mention that I grew up in a small flat with my Dad who was a very heavy smoker & I smoked I guess 10 a day during teenage years & my 20s. I have an appointment with nurse for 3 weeks time, when I asked the surgery my grade of COPD they couldn’t say but said my lung age was 87. Any advice gratefully received. Could I have COPD diagnosis solely from Spirometry. How do they decide it’s not asthma?

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Mytabby
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Troilus profile image
Troilus

Hi Mytabby. I hate all of this you have the lungs of an 87 year old or whatever age some drs stick on people. In my humble opinion this is not helpful and is scaremongering- if you were a current smoker maybe that would be excusable on the grounds it was designed to scare you into quitting, but that is not the case here. If you do have copd then scaremongering is not going to help you. What is done is done. Rant over. 😁

Copd and asthma are indistinguishable on normal spirometry. They are both classed as obstructive diseases, all “normal” spirometry does is identify an obstructive pattern. They way asthma is distinguished from copd in is by an additional test called reversibility testing. This is where you are asked to take the blue inhaler, wait and then do a couple of the tests again. If it asthma the results will be better. (I think the diagnostic criteria for asthma is something like an improvement of 200ml or 12%)

The reason for this extra test is that asthma is more responsive to inhalers that copd. In asthma it is possible to reverse it (get normal readings- although not always) through the correct medication. Copd however cannot be reversed.

The important numbers in the test are FEV1 (forced expiration volume in 1 second ) and FVC ( Forced vital capacity). The then divide those numbers and x by 100 change to give you a percentage - this is the result that is often given as a result. There are charts that will give you your predicted and often these values are given to you when you get your results.

Maybe contact your GP (or ask while you are there) for a copy of your results? If you have online access to your records you might be able to access them there. If you weren’t given an inhaler during the tests then you could also ask about that.

Reading your post another thing came to mind - have you tested for Covid? I only ask because it is doing the rounds where I live.

Asthma and Lung U.K. have a help line 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm. Give them a ring, I understand they are very good and will help you as to what to do next.

Hope this helps

Mytabby profile image
Mytabby in reply to Troilus

hi

Thanks for your reply,very comprehensive info there. I did have to use the blue inhaler, then wait about 20 mins then redo the test. From memory I think there was a very slight improvement after using the inhaler. .For some reason the results aren’t on my GP records, so I’ll have lots of questions when I see the COPD nurse. I’m quite in a panic by my retching when coughing. I had a bad night, haven’t felt like eating much today, tried to do some huff breaths but made me feel queasy. I was very slightly reassured when I got a COPD diagnosis, as I felt something wasn’t right with my breathing. I admit I do feel a bit anxious about the extreme coughing, I’m just about to try a calming app & a read on my kindle.

I use 4 puffs of the inhaler twice a day, but unsure that it’s doing much.

Will check with a covid test tomorrow, I know it’s doing the rounds here.

I just want to get on with my life, activities etc.

Thanks again

Troilus profile image
Troilus in reply to Mytabby

Hi again Mytabby. Apart from the blue inhaler have you been given any other medication?

tomc profile image
tomc in reply to Troilus

Hi, I was told I had the lungs of an 89 year old ... AND HE WANTED THEM BACK.....

Mytabby profile image
Mytabby in reply to tomc

That’s great, like it 😺

Mytabby profile image
Mytabby

hi

No I haven’t, after speaking to the helpline, they suggested I probably need a longer acting reliever, perhaps even with steroid included as well.

I feel I’ve been left a bit out on a limb.

This may have been ok to wait if I haven’t somehow got another virus.

Thank you, I appreciate it

Troilus profile image
Troilus in reply to Mytabby

See if you can get a GP appointment- maybe even a telephone appointment. Chest infections are taken more seriously in copd than they are normally. They might prescribe antibiotics (I know you say it viral, but phlegm on the chest can become infected) and maybe some prednisone for any inflammation the virus may cause. Maybe they won’t but it’s worth a try and it would be an opportunity for you to raise the possibility of additional inhaler.

There are a lot of people on here with copd who have far more experience than me. Hopefully they will be along shortly.

Mytabby profile image
Mytabby in reply to Troilus

Thank you, I may well contact the gp tomorrow, thank you

peege profile image
peege

Hi, I cant help much except to say keep seeing the GP, the more on your medical records the better. I have asthma and when I have an exacerbation or infection I can cough so much & so deeply that I vomit too. It's so horrible, the blue rescue inhaler does help as does keep taking your preventer regularly (mine is Fostair, I can take extra when I need it). Sucking a sweet sometimes soothes the throat &/or sipping warm water with hone & lemon.

It does take a while to get the right diagnosis and the right medication for you........your description of your latest flare up does sound like covid, could that be possible?

Mytabby profile image
Mytabby in reply to peege

Hi thank you that’s helpful, I still have lots of covid tests as my 89 yr old Mum is in a nursing home, she was diagnosed with Bronchectisis years ago.

This doesn’t feel like covid although I know it’s always evolving.

Will make sure I do a test tomorrow & try to contact GP, I don’t fancy waiting 3 weeks till I see COPD nurse.

I appreciate your advice

peege profile image
peege in reply to Mytabby

No, don't wait 3 weeks.

I too was a passive smoker of stepfather's filthy pipe smoke (luckily it put me off tobacco for life)!

Mytabby profile image
Mytabby in reply to peege

Thank you, no I won’t wait that long

Meme50 profile image
Meme50

I certainly can relate. I agree with peeve, do not wait three weeks! Sounds like you need extra medication, possibly a preventative that contains steroids. Good luck and take care. Try drinking warm ginger tea it will help a little.

Mytabby profile image
Mytabby

thanks for your advice, yes I guess it’s probably best not to wait that long

Patk1 profile image
Patk1 in reply to Mytabby

If Yr unwell,best to ring gp as every exacerbation/ infection causes more irreparable lung damage x

Mellywelly profile image
Mellywelly

Hi chook, they usually confirm with an xray, that's what I have had when diagnosed. The main thing now is getting your medication right when you see the doctor or nurse. Good luck 👍 😉

Mytabby profile image
Mytabby in reply to Mellywelly

Hi there

Thanks, will ask about an X-ray when I see them.

Am now positive for COVID though, am q worried, had COVID in March 2021, but didn’t have COPD diagnosis then. I’m a bit anxious now, think it’s making me cough more.

Mellywelly profile image
Mellywelly in reply to Mytabby

Had a strange conversation with my doctor the other day about covid. When I had covid it made me cough and my copd was more controlled because I was constantly clearing my chest. I feel worse without covid because my cough has gone and now feels like it's just sitting there. Let us know how you get on chook. Please don't be anxious, I know it's easier said than done but doing breathing exercises does really help with anxiety and slowing your breathing down. NHS copd website has some good ones 😉

Mytabby profile image
Mytabby in reply to Mellywelly

Thank you, kinda makes sense what you say there. At the moment my cough is very dry & nose completely blocked up. Will try steam inhaler with Olbas soon, helped a bit yesterday. Should be at yoga today, never mind it’ll all come back eventually. Was slightly reassured that I was told my COPD is mild. I’m feeling a bit calmer, when I get uptight again, I can try my meditation & breathing apps. Of course things seem so much more scary at night.

Izb1 profile image
Izb1

I am always like this if I have a cold and find it lasts so long. Its usually the over production of mucus that causes problems and doesnt help the bronchiectasis, I have to take antihistamine to dry this up and find it does help, although it sounds like you need a course of antibiotics and steroid first. I hope you get rid of this soon x

Mytabby profile image
Mytabby in reply to Izb1

Hi thanks all

I did an e consult & have a phone call from pharmacist at GP surgery later re my inhaler.

In the meantime I did a COVID test & it was positive, so am feeling a bit scared & anxious right now.

At least I’ve reached out to GP surgery.

Izb1 profile image
Izb1 in reply to Mytabby

I am sorry to hear you have covid. My daughter and her family have just recovered from the latest bout of this. Ask your gp if you are able to have antivirals. Look after yourself and take care x

Mytabby profile image
Mytabby in reply to Izb1

Oh thanks for this advice, may get back to them. Will try steam inhaler soon as I’m completely blocked up, cough v dry. Still fatigued from December virus. The pharmacist at gp did say my Copd is fairly mild, just diagnosed with my breathlessness, smoking history, my age & being slightly overweight…. Xx

Mytabby profile image
Mytabby

hi

Just had phone call from gp, they’re adding in a Serevent inhaler.

I also had a chat with the helpline for advice as I’m a bit anxious, they’re phoning me back. My Husbands just about to do a test, he had a cold last week.

Kristicats profile image
Kristicats

It would be wise to request a spirometry reading once your chest is clear again to get a true picture. It’s common nowadays to have a spirometry when people have colds/ chest infections but doesn’t give a clear reading. COPD is diagnosed by spirometry or CT scan . Normal chest X-ray is not enough .

Mytabby profile image
Mytabby in reply to Kristicats

Ok thanks for that, will have a chat when I see nurse. I must say though that when I had my Spirometry in November I was clear of any virus or cold.

Hopefully they’ll repeat it soonish anyway. Xx

Mytabby profile image
Mytabby

I really appreciate all your comments & feedback, very helpful. Xxx

Mytabby profile image
Mytabby

thanks fr suggesting another Spirometry to be taken once I’m clear of covid, I’ll certainly ask them about that.

Timberman profile image
Timberman

Hi My Tabby, sorry to hear your troubles. Yes, spirometry can identify VCOPD but this is a name for a set of diseases which all cause the same problem - Chronic Obstructive Pulmonary Disease. I was said to have COPD in the 90s but I hardly knew it. I had just given up smoking (1993 age 50) so ascribed my breathing issue to that. Right and wrong.

In 2006 I had pneumonia, Norfolk and Norwich took a lung biopsy and Oxford Radcliff kindly informed my I had emphysema and bronchiectasis! Since I had just escaped death by leukemia I felt a bit victimised!

Anyway the good thin k was that this brought me into9 the world of the COPD team, first in Norfolk and now in Essex. They are utterly brilliant and way beyond anything an ordinary 'general' practitioner can achieve. So check if you surgery has a dedicated nurse (asthma or COPD) but, whatever, get yourself into the hands of the local COPD team.

Now to medication. You have to know what you have got to treat it. Your breathing can be helped by breathing aids and meds but to get to the root of the issue and extend your life (which I always find helpful) you need the right meds.

And finally - they offer you a Pulmonary Rehabilitation Course jump at it. I went on before my breathing and heart issue became too risky but it was a terrific help and if I could I would go back tomorrow.

By the way, I am now 80 and while not too well, on 11 meds a day, oxygen, nebuliser and using a mobility scooter life is tolerably decent. So chin up kid and beat them!

Doradee profile image
Doradee in reply to Timberman

Your post was so uplifting and courageous. I’ve just been diagnosed with severe COPD and I’m trying not to get anxious Your post has helped. Thank you ❤️

Timberman profile image
Timberman in reply to Doradee

Excellent. Keep in touch.

Mytabby profile image
Mytabby

hi there, sorry to hear of all your problems, all you friendly people are making me feel not so alone, it’s a lovely community.

Yes my GP surgery does have a dedicated nurse, I have an appointment on 12/2. I will certainly ask about the pulmonary rehabilitation course, I’m very keen to do all I can to improve my health.

My husband is just going to pharmacy to collect my new inhaler.

My Mum (89) has Bronchiectisis. She’s used to use a nebuliser, it seems to have calmed down. She requested to go into a care home a couple of years ago, she now has all the help that she needs. She also had chest infection over Christmas.

Thanks again, lovely to hear from you, it’s all calming me down & helping

Alberta56 profile image
Alberta56

I hope the new inhaler works for you, but be sure to go back to the surgery if it doesn't. There are lots of inhalers on the market and you must be sure to get one that suits you. I found an AeroBika very helpful in bringing up phlegm, a small device to help with your breathing. They are available on prescription.

Hope the covid does not affect you too badly- I'm just recovering from a pre-Christmas bout, and have had to take it easy for longer than I would have liked.

Mytabby profile image
Mytabby in reply to Alberta56

Hi there, nice to hear from you, just used the new inhaler, fingers crossed it’ll do something. Someone I spoke to today on the helpline recommended a couple of other inhalers, she expressed some concern that no one had listened to my chest.Will take on board what you said re the AeroBika.

I’m ok ish just worn out with the chest infection I had in December. Now it’s dry coughing, keeping up with Honey, squash, Jakemans etc

We have a wood burner but dare not light it, I don’t think it’ll be very wise.

Hopefully onwards & upwards……

Alberta56 profile image
Alberta56

You just have to pamper yourself till you feel reasonably human again.

Mytabby profile image
Mytabby in reply to Alberta56

that sounds like a great idea 😺

Biker88 profile image
Biker88

as mentioned COPD is just a collective name for some lung diseases, it was going to cover a lot more but at present it’s only emphysema and chronic bronchitis that are officially COPD. Both require X-ray, CT scan and broncoscopy for diagnosis. As neither are curable it’s too easy just to tell people that they have COPD based on a poor spirometry test. I had the full range of tests for my emphysema and Aspergillosis diagnosis, I also have a leaky heart valve all which cause breathlessness. However my constant deliberating cough was eventually shown to be an allergy cough. I’m allergic to the fumes from stomach acid which irritate the lungs, a quick fix was Gaviscon and the coughing stopped straight away. The excess stomach acid is down to a hiatus hernia and now on Omeprazole and coughing stopped.

Mytabby profile image
Mytabby in reply to Biker88

Hi

That’s interesting thank you, yes it’s quite an umbrella term & in my case my diagnosis of mild COPD came about from noticing getting breathless when walking, my age & being a tad overweight. My smoking history & growing up in a very smoky flat. Yes I do suffer a bit with acid reflux which causes coughing, I’ve slept on a huge foam wedge for years which helps a bit.

Will bear in mind when I see COPD nurse next month.

Have Covid atm which is tiring me out with my constant cough.

Anniecheney profile image
Anniecheney

I've had COPD for years and coped fairly well.3 weeks ago I had a horrid cold which left me with the same nasal symptoms as you. As you do I tried a nasal spray then went to the chemist who gave me a steroid one as he said it was inflammation. So bad I went to the docs on Friday. He agrees that it's inflammation caused by allergies and aggregated by the vick spray I used. Now have a stronger steroid spray and a neti pot and it does feel easier this morning. Having thoughts about getting an air purifier.Hope you soon feel better x

Mytabby profile image
Mytabby

hi

Thanks for your comments, will bear it in mind. My Covid is a bit improved, tested negative on Friday. I’m still very tired & coughing still sometimes uncontrollably, can feel muck stuck in throat. I’ve had a small Dyson Pure Cool Me fan on my bedside which is also an air purifier for a few years, I find it very helpful ,always have it on at night. xx

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