My partner has just this month been diagnosed with emphysema. He's 64 and I'm 31, we've been together six and a half years, and I suppose I'm just looking for a bit of advice on how to cope with the diagnosis and tips on what I can do to help.
He was hospitalised in January with pneumonia and sepsis - his discharge letter in early February also mentioned heart failure but nobody mentioned this while he was in hospital! - and, following a routine follow-up with his GP a couple of weeks ago, was given antibiotics for a week because she thought he might still have a chest infection. There were visible signs of improvement, especially in the first few days. His GP then referred him back to hospital after that course because of his blood oxygen levels dropping to around 85 and his heart rate being over 120 when he moves about. (Bear in mind his resting heart rate is around 90-100, and 'normal' blood oxygen levels for him are around 97%.)
He's had a CT scan, a chest x-ray, and numerous blood tests, but no lung function test yet. He smoked from a young age but quit in January 2007 and hasn't touched a cigarette or any form of replacement since.
He has type two diabetes and pain in his lower back from a fall in April last year, so he wasn't very active to begin with. However, he didn't have any symptoms of breathlessness prior to the chest infection at the start of the year. Sometimes when we'd go out he'd have to stop and sit down but that was due to the pain in his back, not because he was short of breath.
He's back at home now and still sounds 'breathy' but he says the tightness in his chest has eased and he feels like he's getting 'almost' a full lung of air, compared to half earlier this year and three-quarters when on the antibiotics. He's got a dry-powder inhaler that he takes once a day in the morning, as well as 750mg of carbocisteine three times a day, but that's it. He has a bit of a cough but it's mostly dry.
He's still becoming breathless when moving about but I'm hoping part of that is due to how long he has spent in hospital beds this year, and he might be able to build some strength back up. He's still spending practically all his time in bed, only getting up to use the bathroom, which I don't want to become habit.
Naturally most of the online articles about emphysema are highly negative, and I was horrified to read the average life expectancy was only five years from diagnosis, though reading some threads on here has helped. I have anxiety and depression and I'm struggling to come to terms with it a bit.
His consultant at the hospital apparently said if he uses the inhaler it won't get any worse, though pretty much everything I've read says it's a progressive illness. I couldn't speak to the consultant myself as they were never around during hospital visiting hours, and I'm concerned my partner is possibly keeping bad news from me because he knows I won't handle it well, but now I'm obsessing over it!
Does anyone have any advice, please?
First Casablanca he did the right thing stopping smoking in 2007 - I have "emphysema" and multiple conditions including heart also.
I think he must look after his "type two diabetes" that as you know is vital...he has had it rough but with summer his "emphysema" should be more bearable.
Has he actually got CHF (heart failure) that can affect his breathing also.
Main thing is take all medication for his COPD and other complaints, keep warm and take more care not to fall, use a walking stick for example. I am 77 and have had COPD for many years, to heart conditions for many years and cancer, but am still here.
Emphysema if treat proper is not an automatic death sentence - Most of us on here have a rescue pack for when we have a flare up. steroids and an antibiotic - Has your husband got a rescue pack at home......Good luck
Hi Ern, thanks for your reply.
We're monitoring his blood sugar levels and he's on two medications, including insulin injections, so his diabetes will be managed from now on.
We don't know much about this heart failure. When he was hospitalised in January, they did an echocardiogram but I was told there were no major concerns. It was only when we got his discharge letter that it mentioned heart failure! I rang the ward and the head nurse couldn't find anything on his notes about it. All we know is it said 'partial anomalous venous drainage' but nobody has told us what this means in practical terms.
He has been given both a walker and a walking stick, and has been drinking more to help keep his blood pressure up, so hopefully no more falls. I'm giving him his meds every day too so he'll definitely be having everything that's been prescribed.
The doctors at the hospital mentioned an 'emergency' inhaler but he hasn't been given one. I queried it with the nurse who gave us his discharge meds and she just said, 'If it isn't on the list they must have decided against it.' I'll raise it with his GP when we next go.
Thanks again for your reply, and I hope you're keeping well.
Just to say I have had a few "echocardiograms" and they are looking after my valves but, quite a few years ago I was given Ramipril for heart failure but honestly, it never was mentioned again and I have been tested for CHF. Good idea seeing your GP, really they mainly are good and if he needs inhalers - He will get one and maybe a long lasting one.
I wish you both all the best and I can speak for most on here, ever worried start a thread. Take Care,
Do you know the name of the dry powder inhaler?,
Mine is ADVAIR
Yes, its brand name is Anoro Ellipta. He's only had it for five days but says he can't really notice any benefit so far.