Dyspnoea..: I have COPD and used to... - Lung Conditions C...

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Dyspnoea..

Ern007 profile image
32 Replies

I have COPD and used to have massive flare ups. regular.

I still get them but only winter.

I get breathless easy. say walk to kitchen and back from lounge. I often have Dyspnoea - now on my medical records.

Dyspnoea is like air hunger.

I have heart problems that could cause Dyspnoea - I suppose Emphysema could also.

What puzzles me, I went to doctors with breathing problems, she did not put this down to COPD. but Emphysema - it is confusing.

Any other Asthma or COPD sufferer been diagnosed with Emphysema?

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Ern007 profile image
Ern007
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32 Replies
Tia4209 profile image
Tia4209

Have you had a chest scan that showed Emphysema, I don’t think Dr’s can tell what form of COPD you have without a scan and from my understanding COPD is an umbrella term for Emphysema and Chronic Bronchitis. If you feel that it’s your heart that is causing your breathing problems then don’t let the GP pass of your difficulties as being caused by lung disease, if it was me I would ask to referred to cardiology.

Ern007 profile image
Ern007 in reply to Tia4209

Yes Emphysema, has been confirmed and has caused thickening to both lungs, I have a cardio who found I had leaking valves, plus A Fib and my breathlessness could be the cause . SORRY FOR LATE REPLY.

ajay profile image
ajay

Hi, I have had Emphysema since January 2008 and had terrible flare ups resulting in hospitalisation and oxygen, about 4 times every year taking me a month to regain my strength. I have not had a flare up for some time now but work so hard not to go out in bad weather, I stay at home most of the time in fact. I must say I get cross with the term COPD which in my humble opinion is a blanket term for so many unrelated lung conditions. Emphysema is very specific as is fibrosis and Asthma and Lung cancer etc etc. I was diagnosed with a heart condition a month ago. I get very breathless too especially when the air temperature changes. I changed my lifestyle which has helped immensely. I have no antibiotics in the form of cows milk, cheese, eggs and icecream or yoghurt and so when I have taken my prescription antibiotics they WORK. But my fight for this horrible disease was stronger than changing my food habits. It worked for me enormously for the last 9 years. I am not suggesting anyone do as I do, it’s a personal choice, that works for me

Ern007 profile image
Ern007 in reply to ajay

SORRY FOR LATE REPLY. My flare ups have decreased although my lungs are worse, but breathing problems have got worse, I was at Asthma Nurse this week and she tried to get me on a three in one inhaler - I refused - I got an Asthma score of 14 from 25, means badly controlled, now I am more confused. being I have COPD/ cardiac and now worse asthma . The trouble with the label COPD is that COPD means different things to different people.

I was diagnosed with Emphysema about 20 years ago, not COPD - I have COPD now with silly wording changes.

Pamboo profile image
Pamboo in reply to Ern007

I've had COPD/Emphysema for 9 years. I started out with Anoro Ellipta which is 2 meds in one. No steroids. I like. Also I take daliresp and have only 2 severe exacerbations in 9 years. My breathing goes from almost normal (sometimes I have walked to lobby and back w/o O2 because I breathed so well I forgot my POC!) THEN other times I can barely walk from bed to kitchen without SoB.

Ern007 profile image
Ern007 in reply to Pamboo

I was offered TRELEGY ELLIPTA - An all in one. I was not interested as I am fine on my 3 inhalers, This has a steroid.... Yea I am same, can go in bedroom fine, but sometimes same journey out of puff..

Active ingredient

fluticasone furoate

vilanterol trifenatate

umeclidinium bromide

CDPO16 profile image
CDPO16

I have emphysema with asthma overlap. The emphysema was diagnosed in 2015 by CT scan, the asthma by lung function tests at hospital. I am breathless on slight exertion. COPD is the term used for emphysema and chronic bronchitis. Hope this helps Ern.

Ern007 profile image
Ern007 in reply to CDPO16

SORRY FOR LATE REPLY. I have emphysema and have had asthma for a while -- seems reading these replies - breathlessness is more common than I thought - I have had emphysema for 20 years or more. I remember the cockpit teat - ' 80 degrees lung function tested - last test was breathing against what seemed like a brick wall - I hated that. My asthma score is 14 out of 25, not controlled. BTW Nurse tried to change my inhalers to a threee in one type, I refused that, sick of changes.

i

MoyB profile image
MoyB

My diagnosis has been changed recently from 'COPD' to 'mild fixed airways disease' and chronic asthma'. I also have Bronchiectasis.

I was diagnosed for asthma in 2001 and COPD somewhere around 2012, with Bronchiectasis hopping on board in 2015.

I also have had Paroxysmal Atrial Fibrillation for years, finally leading up to a Catheter Ablation in July.

I have gone through many periods of breathlessness and low sats. A year ago, my ankles and legs were swelling badly, my heart beat had become more irregular more often leading me to have a few trips to A&E.

Since the catheter ablation was done I have felt SO much better. I am much less breathless and can now walk up gentle slopes again without stopping to get my breath.

BUT alongside this, it was found that I was Ferritin deficient and then Folate deficient. The treatment has coincided with the improvement in my breathing.

I'm sorry to bore you with this but I do think you should chase your GP for some further tests as there may be something quite simple that is being missed.

I am honestly feeling better now than I have for years.

To put it into context, in the past I have struggled to walk twelve steps through to the kitchen and at my worst have been fighting for breath in hospital.

Please do insist getting the correct diagnosis from a specialist if you can. There may be suitable treatment out there that will help you to feel so much better and maybe get your life back.

xx Moy

peege profile image
peege

In the UK COPD covers both emphysema AND chronic bronchitis so basically you just have the emphysema side of COPD - like many members here . It may be different in other countries , I agree, it seems confusing.

I have asthma and small airways disease, take inhalers twice per day and in the winter I take an antibiotic on Monday Wednesday and Friday which helps enormously in keeping infections at bay.

Ern007 profile image
Ern007 in reply to peege

I have emphysema but no bronchitis - I have asthma which has got worse - doctors have a problem with me, with three heart conditions also, which is causing Dyspnoea.? it's confusing. I got worried earlier this year when my doctor advised me not to fly, it was only to the Isle of Man.

peege profile image
peege in reply to Ern007

i understand. The inititials COPD means: Chronic Obstructive Pulmonary Disease. Whilst COPD covers both emphysema AND chronic bronchitis they are separate things and not actual bronchitis. That's something different, you've been diagnosed with the emphysema part of COPD. Presumably you had a spirometry or lung function test.

It must be so difficult with more than one heart disease as well as emphysema. I sympathise. P

Ern007 profile image
Ern007 in reply to peege

When I was diagnosed with emphysema - I was sent to consultant. He did various tests the main one a Cockpit Test. You sat in a cockpit at 80 degree F with a breathing tube and all manner of tests, including instructions to try and breath against what seemed a brick wall. This was the Lung Function way back. I had spirometry at every visit to hospital and on review at CD - Spirometry was stopped as I became dizzy most times but also, I have monthly eye injections for ALMV and you can't have that and spirometry .

I have heart problems once out with VT - one step away from VF - Now AF and valve problems and it makes it hard to know what affects my breathing most - Doctors I feel sorry for, they have the impossible task of saying one more than the other.. I have got used to what I have,,,Thank's for reply peege.

Delia69 profile image
Delia69

I was recently diagnosed with emphasema, but under the copd umbrella.

Ern007 profile image
Ern007 in reply to Delia69

Yes COPD covers everything, When I was diagnosed with emphasema, - it was called emphasema, not COPD.

Loopylorre profile image
Loopylorre

I was told I had emphysema when diagnosed with COPD, I’ve never had a ct scan, only ever x rays , but it’s impossible to see anyone here anymore since covid, had to demand a face to face annual review this year & had to go to a completely different surgery that was a pain to get to, but nothing is going to change any time soon here, so I’m hoping I manage my health myself well, 🌸🌺🌷

Ern007 profile image
Ern007 in reply to Loopylorre

That is rotten and unfair -Now COVID is more controlled, I can ger a face to face. YOU should not have to manage your own heath.

Loopylorre profile image
Loopylorre in reply to Ern007

I know, it’s terrible here trying to get any appointments or even just speak to someone, it’s been going on for so long now though, I really can’t see it ever changing, 😊🎄⛄️

Ern007 profile image
Ern007 in reply to Loopylorre

I have heard this from others - I moved to a village and doctors are good. I really hope you get treat very proper and soon, so unfair.

Loopylorre profile image
Loopylorre in reply to Ern007

thank you 😊

Karenanne61 profile image
Karenanne61

A consultant told me COPD is an umbrella term for lung conditions such as emphysema and bronchitis. On ct I have only minimal emphysema but I have very severe copd, thickening of the bronchial walks and air trapping. It's all very confusing! It matters because we need to ensure we are getting the best, appropriate , treatment.

Ern007 profile image
Ern007 in reply to Karenanne61

I started with mild emphysema - but it changed to the COPD umbrella I am not sure what you mean by "thickening" - What has happened to me is scarring, possibly the same. It can be confusing, I agree.

Karenanne61 profile image
Karenanne61 in reply to Ern007

Thickening of the bronchial walls are found in bronchiectasis patients but according to my consultant I don't have bronchiectasis, even though earlier notes of mine say I do! 🤦‍♀️ To be honest, at the moment, I'm stable and managing ok so I'll carry on as I am.

Ern007 profile image
Ern007 in reply to Karenanne61

I don't have bronchiectasis easier, I think it's a scary problem coughing up blood. By thickening do you mean scarring, I have that on APEX both sides of lung in last 3 years and scarring further down for a long while. Glad you can mange OK, I try and do that.

Karenanne61 profile image
Karenanne61 in reply to Ern007

I just know my scans show 'thickening '. Nothing has been said about 'scarring'. One consultant told me that sometimes diagnosis can differ according to how, and by whom, the scans are interpreted! I think all most of us can do is 'manage'. With varying degrees of assistance from the medical professionals and lots of support from here.

Ern007 profile image
Ern007 in reply to Karenanne61

``Sounds to me there is little difference, probably the same. the symptoms would suggest that but who knows. We have to manage and yes, good supportive forum..

Karenanne61 profile image
Karenanne61

*walls *

Verbena_67 profile image
Verbena_67

It seems we all get very little help from docs these days.

Ern007 profile image
Ern007 in reply to Verbena_67

My doctor is fine, the hospital specialist are IMO at best ordinary,

Falcon22 profile image
Falcon22

Hi ...I have Serve Emphysema...but the umbrella term is COPD... hospital consultant use Emphysema and doctors ect use COPD....I have ambulatory oxygen...and breathless main problem not so much excess phylum. I've had lots CT scans it seems these tell doctors what form of COPD you have...hope this helps breathe easy

Ern007 profile image
Ern007 in reply to Falcon22

Thank you. I have Emphysema./Asthma and heart problems - I have no oxygen but feel it would benefit, based on I felt better in hospital on it..

Ern007 profile image
Ern007

SORRY everyone for my late reply's

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