COPD or lack of it: I was told at the... - Lung Conditions C...

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COPD or lack of it

madamtaz profile image
12 Replies

I was told at the beginning of pandemic I had COPD. Since then I have had no tests so have no idea what is wrong with me. My mental health is getting worse, I keep asking for a proper diagnoses and keep being told the same thing, we can't do anything because of covid. I asked my doctor for a letter to prove I had COPD the other day and got one back saying PROBABLE COPD. My breathing is now at a point where I cannot walk up a slope without having to stop to catch my breath. When are the medical practitioners going to realise that covid is going to be around for a long time and the excuses have worn so thin there are holes appearing. All I want is to know what I have - is that such a bad thing.

12 Replies
Patk1 profile image
Patk1

Welcome to the forum.Do u smoke or are u exposed to toxins harmful to lungs?

Do drink extra fluids,try to exercise + limit exposure to colds,covid and flu viruses which can be damaging to airways.have u had x-ray or scan?

I think u may find reading up on " controlled breathing" helpful to practise and use as needed.try walking slower,and use the breathing technique

knitter profile image
knitter

Could you contact the BLF helpline which is open during the working week for UK residents on

03000 030 555.

CDPO16 profile image
CDPO16

Hi and welcome. It is very unfortunate that you were given this possible diagnosis as the pandemic started. Normally a spirometry test would be done to confirm it but these were stopped because of covid and haven't been restarted by most GP practices. Were you prescribed any inhalers to help with the breathlessness? I would certainly contact your doctor and tell them that your breathlessness is worsening. You should at least be offered a telephone consult.

disney75 profile image
disney75

I can completely understand why you want to know what’s wrong with you. I was also told at the start of covid that I had copd. I was surprised by my diagnosis and queried it as I don’t smoke (never had) and was only 44. Just before the first lock down I had my first ever chest infection which is why I ended up having one X-ray and being given a diagnosis of copd from a gp surgery nurse!

To cut a long story short I ended up having more X-rays and ct scans and was then diagnosed with bronchiectasis. I’ve also had lung function tests including spirometry which didn’t show copd. After this I had a bronchoscopy due to an enlarged nodule on one of my lungs.

I suppose what I’m trying to say is despite covid I’ve now managed to have numerous tests and consultations with respiratory consultant after being referred by my gp.

I would get in touch with your gp and see if you can have any further tests which can aid with your diagnosis and treatment.

madamtaz profile image
madamtaz in reply to disney75

Believe me I have tried, but I get the same answer over and over again. We can't do the spirometry test because of covid, we haven't been given permission yet to do the spirometry test because of covid. I have not been offered x rays or ct scans so you are very lucky and in 2 years only seen the respiratory nurse 3 times despite me having several choking attacks where my throat just seems to close up for no reason and cannot get any breathe into my lungs. I phone up and get told 'it's part on my COPD'. A diagnoses that they have not even confirmed yet. I'm glad you have had yours sorted and at least you know what you have. Maybe I should come and see your doctor haha

disney75 profile image
disney75 in reply to madamtaz

I wonder if it’s just your gp surgery not doing the test or the hospital. I had mine done at the hospital after being referred by either my gp or respiratory consultant (can’t remember which referred me).

Believe me at times my gp surgery have been rubbish. I’ve previously had to say I wanted to talk to the practice manager before they would help me. On other occasions though they’ve been great so I’m not going to grumble.

I hope you managed to get sorted and get the care you deserve.

CaliGuy7 profile image
CaliGuy7 in reply to madamtaz

It's plain to see what your main issue is, you need to go to another medical doctor in another facility with whatever paperwork you have.

Obviously the gp and medical facility that you've been going to either doesn't want to or care to properly treat you. It happens, so your best bet is to flee that place and find another place and doctor who will treat you. Even if it's futher away.

The best thing to do is research the differences of patient care directly from patient reviews online.

Like Google has reviews. You can read up on real reviews because people do not mind leaving both positive or negative reviews about their experiences.

Flee both your doctor and your doctors facility. I would seek another

LiveSalt profile image
LiveSalt

Have you been given any inhalers at all? In some practices the "respiratory" nurse is also the "diabetes" nurse and the whatever else nurse, so like the GP is not a specialist in lung issues. We used to have a good one, but the current one is virtually useless for lung disease. You must persist with them, you've not had an actual diagnosis so have, effectively, been without treatment for the two years. This doctoring by guesswork is beyond shameful.

Until you know what's going on, best advice I can give is to allow yourself time to get to where you have to be, the stress of hurrying because you're late is very exacerbating, and in my experience likely to cause an instant flare up, which makes you panic, which makes it worse! Slow, calm and breathe ...💗

Babyboy12 profile image
Babyboy12

Good morning madamtaz I had asthma for years than when I started coughing a lot and having chest infections all the time my doctor said it sounds like copd which I never smoked in mylife but been around family that does. As I was still getting them my doctor said she sent me to hospital I went to heartlands in 2020 and the nice doctor I saw said your not got copd by the sounds of it but thing its bronchiectasis but need to do a ct scan to confirm it. Had two done and by few weeks had a letter to say it is bronchiectasis. I am on 3 lots of inhalers and tablets. But since than been having chest infections and getting out of breath more even walking up the stairs. Since the covid I only saw the doctors twice in hospital I hope you get sorted and ask to have a scan done

Alberta56 profile image
Alberta56

It sounds as if you are with one of those crap surgeries. Whatever limitations they are subject to they should be doing all they can to make you stable and comfortable. Demand to be referred to a respiratory consultant, so you can have xrays and scans to show what is going on. Your symptoms could be caused by any one of a number of things. You need and deserve to get this sorted. Best wishes and good luck.

Bingo88 profile image
Bingo88

Try asking your doctors to refer you to a respiratory clinic. Because your not happy with no answers from your doctors. My doctors are doing Respiratory testing Because I had a check up a week Monday gone. Hope you get some answers quickly. Brian

d0ttysslave profile image
d0ttysslave

Hello Madamtaz,

I can certainly empathise. I am also waiting for a formal diagnosis. I think, as others have said, the services that you are offered do vary across GP surgeries. I had a chest X-Ray which showed hyperinflated lungs, and this is when the possibility of COPD was raised. However, I have not had a spirometry test which would confirm or negate COPD. I am on the waiting list for the test, but I am not sure how long I will have to wait.

Personally, I think it is more important, during outbreaks of Covid, to perform thorough diagnostic testing. It is important for people to know whether they have increased vulnerability. Diagnosis can also rule, or identify other conditions.

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