COPD - what to expect

[Schweetheart]

My mother has recently been diagnosed with COPD. She was quite a heavy smoker until she was about 40. She’s early 70s now. Her mother, my grandmother, died of emphysema and was a heavy smoker too.

I’m not really in contact with my mother so I can’t talk to her about it. She had several chest infections and viruses and a bout of pneumonia over the past 7-8 years that have always knocked her sideways with inconclusive tests and no real clarity on what could be wrong and she was always told it’s age/a virus/unfortunate etc…. so from what I’ve read, the COPD diagnosis seems to make sense.

She is a overweight but far from obese. Until recently she was walking her dog a lot so whilst she wasn’t doing marathons she was quite active I guess. I hear she’s struggled to stay active since her dog died and I understand that light exercise can really help.

I’ve also read that it’s quite manageable with inhalers and steroids if needed etc.

What happens “later”? How does it evolve? Will there be a deterioration and is it likely she’ll go on oxygen? Or do some people live with it “ok”?

She always said that watching her mother die of emphysema was horrendous so I imagine she’ll be struggling with this diagnosis.

Neither her or her husband have told me directly about it, and seeing as our relationship is not in a good place I am feeling a bit lost as I’m one of those people who needs/likes facts and information. I live abroad so am not in a great position to support her anyway… but I would still like to know a bit more about what she is dealing with.

If you are on Facebook there is a fantastic group, COPD UK, go on this. It has real people with advice/anecdotes.

My mother has COPD and was diagnosed around 10 years ago. She's still the same as she was then so it hasn't gotten any worse but she did stop smoking straight away. She gets breathless when walking far distances and some days even when putting her shoes on but she still lives a very full life and does most things she enjoys just slower. For example if out shopping we take a few breaks and sit down.

She had a scary moment with a chest infection but now it's better managed and she has an emergency pack of antibiotics and steroids in the house at all times. She takes a few inhalers a day too.

My mum had COPD. She was on oxygen when needed, which became quite a lot towards the end, but it was actually lung cancer that killed her. The key thing for me was that every time she got a flu she would drop a notch in lung capacity. That made her world progressively smaller, and struggling to breathe is really scary.

For her, the COPD was well managed, nhs were amazing with the oxygen machine and swapping for the travel one quite often. She got lung cancer before she was gasping for breath on oxygen.

She wished she'd done more exercise when she could, but was accepting that she'd had her life at the end. The COPD stage she still had a good life, could travel in the UK, do tourist attractions, go to see family and used a motor home a lot. Also a rollator set of wheels which the oxygen machine went in and had a seat was really useful.

Thank you for the replies.

Glad to hear it’s manageable for your DM @YouveBeenLittUp. How old is she?

@Rollercoaster1920 it sounds a bit tougher for your DM, I’m sorry you’ve lost her. I had read that lung cancer can be more common in COPD sufferers. My DM has been prone to chest infections, and colds, though not sure that’s as severe as real flu.

I’ll take a look at the fb group too, perhaps I can lurk. Thanks @Knockoneofftheshelftowin

COPD is a really mixed bag and many people live 'with it' rather than 'die of it'. Most of those that have life impacting symptoms and die from COPD tend to continue smoking until symptoms are bad enough to stop them. This is my observation as an ED clinician anyway. :)

It's good to hear that your Mum no longer smokes.
My mum continued to smoke until she couldn't.
Your mum may have a copd support nurse, inhalers and using them correctly will really help. My mum was invited to exercise classes for people with COPD.
She did end up on and oxygen machine and it was very difficult but this was severe end stage COPD.

Yes she stopped smoking 30 years ago, but was a pretty heavy smoker before that. And grew up with her mother being a heavy smoker. Makes me worried for myself tbh. I smoked at uni and then “socially” until my late 20s but obviously grew up with DM smoking at home too.

The “living with” rather than “dying from” makes sense.

I am feeling a bit stuck with what to do in terms of contacting her. Probably a whole different thread tbh.

My auntie has COPD and emphysema she is currently on inhalers and a steroid inhaler also she has antibiotics that she takes 3times a week to keep the chest infections at bay also has a rescue pack on hand if she does start with one.

She also is having a lung reduction to cut away part off the dead lung that is caused by the emphysema, so there are now options out there now that can give a better quality off life to someone with COPD and emphysema

@Schweetheart she's 67

My husband has emphysema COPD, he was diagnosed in October after several chest infections. He still smokes which I’m not happy about, but he says it’s his decision and he has cut down . Since his diagnosis he has gone through several inhalers and he is now on a steroid inhaler (Trimbow - I think). His is progressing at an alarming rate, but the smoking is not helping him. He will be attending pulmonary rehab soon, so hopefully they can knock some sense into him!

It is different for everyone though. My grandmother had COPD but hers barely progressed into severe symptoms and she managed just fine on inhalers.