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Recently Diagnosed COPD

Denton2 profile image
15 Replies

HiI've been recently diagnosed with mild COPD about 2 months ago. Tbh I really only noticed it doing uphill walks or long walks . But in the past few weeks it's become more apparent. Now just having a shower or going up the stairs makes me breathless. It seems to be getting worse and quickly. GP has given me.an inhaler and said that's pretty much it until an annual check up.

Nothing else is on offer. Is that pretty much how it is ?

I'm off work with another unrelated health problem but really don't know if I could even manage much work as I'm constantly exhausted and fall asleep all the time.

Are you just expected to get on with until your hospitalised or dead ?

Thanks for any advice

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Denton2
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15 Replies
Mellywelly profile image
Mellywelly

You should have been given a reliever pump for example salamol or ventolin and an inhaler which is your daily medication for copd taken once daily or twice daily which ever they give you. If you haven't then I would seriously be asking questions chook 😉

SimonJJJ profile image
SimonJJJ

As Mellywelly says. You should have a preventer and a reliever. Get onto your Doctors for an appointment with the asthma/ respiratory Nurse if you need help or if you feel your condition is getting worse.

knitter profile image
knitter

Aluk have a helpline open for UK residents during office hours .

I guess it’s Ventolin / Salbutamol …blue inhaler that you have

How many puffs a day are you using .

Seems your breathlessness is getting worse ….back to your health professional tell them your symptoms and get an appointment .

Sounds like you need to be assessed again .

If you have to wait a while , try your pharmacist for advice .

Bingo88 profile image
Bingo88

Good morning. I personally would ask to see a Respiratory nurse if your practice has 1. And also ask for a. Lung function test. When I was 1st diagnosed my doctor just gave me a Sabutamol inhaler which was completely useless. Brian

kev60 profile image
kev60

hi and welcome , you should have two inhalers as others have said. One is a daily inhaler and the other is for when you’re out and get short of breath. You also need a COPD health plan this tells you when you need to take your rescue meds (which you also need (also called rescue pack). Maybe a good idea to get a referral for pulmonary rehab (I was on referral for two years and then it took a further two years to get appointment) good luck.Kevin

Karenanne61 profile image
Karenanne61

NO! There are lots of things that can be done to manage copd and enjoy a good quality of life. Pulmonary rehab is excellent. Exercise, healthy eating, having fun, taking care of your mental health are important. . You need a good consultant to make sure you are properly diagnosed then appropriate meds. If you check out copd on here you will see lots of us living fulfilling lives WITH appropriate meds and support- especially from other members!

Denton2 profile image
Denton2 in reply to Karenanne61

I haven't been seen by a consultant just a respiratory nurse. I'm not eligible for the respiratory rehab or anything else. I've been told I will have an annual check up with the respiratory nurse but this will not include spirometry due to back log. It was a 4 month wait for initial spirometry.

Hence my msg to see if this is normal across the UK. I guess it differs .

Karenanne61 profile image
Karenanne61 in reply to Denton2

I am curious as to who, and how you were diagnosed. I thought it was by a consultant following tests including a ct scan, xray, blood gases and lung function tests. I had lots of tests before I was diagnosed but maybe that was because I was on life support following type 2 respiratory failure. I am also aware of the post code lottery. However, if your inhaler isn't working maybe another visit to the gp is needed.

Denton2 profile image
Denton2 in reply to Karenanne61

No consultants , just a respiratory nurse with spirometry and x Ray. I did check NICE guidelines and it said something along the lines of " a member of the respiratory team " can diagnose with spirometry. I guess it does vary?

PaulineHM profile image
PaulineHM in reply to Karenanne61

PR is currently only available for level MRC 3. NICE are saying they now want MRC 2 included, but of course resources are few so the waiting times are long.

Ergendl profile image
Ergendl

Consider joining a singing for lung health group or look up diaphragm breathing exercises on YouTube.

I was diagnosed with moderate COPD in 2015 after taking a cable car to the top of Mount Teide. I started a singing for lung health group, did Pulmonary Rehab and generally improved my fitness. My COPD readings have improved to mild, with FEV1 at the bottom of normal. Thanks to the advice of this group, I've been able to make the changes that mean I live with my condition rather than suffer from it.

All the best. As a past member Toci advised me in my early days, don't commit suicide by sofa.

Hoobs profile image
Hoobs

It's also worth remembering that you are newly diagnosed and as such are probably suffering from a certain amount of anxiety, consciously or subconciously, it happens to many of us and is a normal reaction.

Breathing is , for most, an automatic process. If you ask someone without lung problems how often they think about breathing , 99% would say never. When we think about our breathing we take it from an automatic process where our bodies regulate exactly how much oxygen we need, to a manual one where we THINK we know what we need and breathe at a completely unnatural rate.

I am not medically qualified and as others have said it may be best to check with your GP as medication can be trial and error , but you also need to give yourself time to settle down and get used to a diagnosis that if you do the correct things, can be well managed for the rest of your life.

Denton2 profile image
Denton2 in reply to Hoobs

HiI was just wondering if everyone had a similar experience when diagnosed. Hence the post .

I've been told the waiting for diagnosis and lack of annual spirometry is due to overwhelming demand in the area I live in.

I've probably had copd for a couple of years undiagnosed as I'd been to GP a few times over breathing and dizziness.

It seems I had an exacerbation in June. But didn't get diagnosed till Oct .

So it's not particularly new but the reduced ability to breathe is .

But thanks for your input. Just wanted to know if there was any help I was missing.

PaulineHM profile image
PaulineHM

Hi there,

I am sorry you feel you have to ‘just get in with it’..I know it feels like it but there is lots of help out there.

Breathlessness with COPD is a symptom of the condition however there is hope! We can reduce our breathlessness with regular exercise - exercise which brings about breathlessness ( to a certain level )

You may have a local respiratory exercise class you can join ? Have a look on line for one. The fitter you can become the better the level of function you will have. Exercise is the best non pharmacological treatment we can give ourselves.

The Asthma Lung U.K. has some exercise videos on its website. Learn all you can about your condition is my advice. They have a helpful helpline which you can use as well.

It’s a long process ! I know this because I have been learning for the last 20 years and still learning too.

Go well,

Pauline

Issy22 profile image
Issy22

Hi Denton2

Welcome to the forum.

Before I was diagnosed I had to have several tests, spirometry, lung scans, cat scans , x- ray and bloods taken then the results are interpreted by a consultant.

You mentioned you were seen by a respiratory nurse. How did they diagnose you ?

Have you considered this breathlessness may not only be your lungs, have you had an x- ray for a collapsed lung or blood tests to see if you have a blood clot in the lung or have you had your heart checked, have you had covid ? Could it be long covid.

Could your other health condition be exacerbating your breathing.

I would go back to your Gp and ask for a referral to have more tests done. Also if your inhaler is not working you may need a different one.

As for the pulmonary rehabilitation I was recently diagnosed and told the waiting time was 6 months to a year .

I Hope you feel better soon

Issy x

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