Partner diagnosed with emphysema

[Casablanca42]

Hi all,

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?

[Ern007]

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

[Casablanca42 in reply to Ern007]

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.

[Ern007 in reply to Casablanca42]

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,

[doc1947g in reply to Casablanca42]

Do you know the name of the dry powder inhaler?,

Mine is ADVAIR

[Casablanca42 in reply to doc1947g]

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.

[Alberta56]

Sorry you're having to cope with this distressing news. If it's any help my dad was diagnosed with emphysema in his early 70ies and lived to 84. He never managed to give up smoking entirely and the treatment in those days (the 70ies) was minimal. They sent him home with an oxygen cylinder and left him to get on with it. He never found out how to use the oxygen cylinder and smoked next to it- good job it wasn't leaking. With proper care, which you seem to be getting, your husband will not be killed by emphysema. Don't believe the rubbish you read on the internet. Plenty of people on this site will be along to tell you they've lived good lives for more than 5 years. One thing: I think your husband should try to become a bit more active- we're all told that-not much at first - little and often ,and very gently. Heart patients like me are told that as well as lung patients. Very best of luck. xxx

[Casablanca42 in reply to Alberta56]

Thank you. Yes, I agree with him becoming more active. I know it will aggravate the pain in his back but I'd rather that than him be out of breath walking 12 yards.

[djbctla in reply to Casablanca42]

hi Casablanca,

Back Pain:- I use “pound shop” pain patches, - orange 2 pack - for back pain, and find they do help. They heat up. Perhaps, try them and see do they help. Albertas’ advice about NOT believing any internet information etc., is on the mark, “rubbish” as she said. Treatment - Medical, - self help makes all the difference.

Keep in touch with us.

Bernardine🥰🤗🤗🤗

[gingermusic]

Hi, I have suffered from Emphysema for the past 33 years so as you can see you can live a long life its not a death sentence by any means. Glad the smoking has stopped that is the most important thing. Only real advice I can give is that he eat healthily take all medications given and exercise. If he can get on a Pulmonary group then do so as they really are beneficial. Other than that enjoy life. He will feel better once the warmer weather arrives our lungs do not like the cold at all. I wish you both well. Drop me a line if you feel I can help further. Best wishes Ruth

[Casablanca42 in reply to gingermusic]

Thank you for your reply, Ruth. That's very uplifting to hear.We're working on his diet; he lost over three stone with having little appetite since his fall, which is partly why the pneumonia etc hit him so hard. We're seeing a dietitian on Wednesday, and of course he has to learn what foods he can have with his diabetes.

It's the exercise I think I'm going to have to push him a bit harder to do.

[gingermusic in reply to Casablanca42]

Even a walk each day increasing the distance slightly daily. If to cold or wet do some indoors. I hate exercise so can sympathize with anybody who struggles with it. Do things slowly bit by bit don't try and do things new all at once. I wish you both well Ruth

[Casablanca42 in reply to gingermusic]

Yes, at the moment he is only going from bed to the bathroom and back maybe three or four times a day, which is only around 20-25 metres each trip. He struggles a bit with stairs so I've suggested walking from one side of the bed to the other a few times; at least if he needs to sit down he can do. He can't just sit in bed and magically wait for his breathing to improve; he has to help himself too.

[gingermusic in reply to Casablanca42]

Oh gosh no sitting in bed all day is the worst thing he can do as his muscles will just waste away. Can you not get a stair lift fitted? I have managed to get one without paying for it and I use it to go upstairs if I need to but always walk down again. Have not used it to come down, My next goal is to try and get out and do some walking once the weather improves as I cannot stand wind cold and rain. Hope you can get him to realise he has to help himself you cannot do everything for him, no matter how much you love him. Wish you well, Ruth

[Casablanca42 in reply to gingermusic]

We had a home assessment when he first came out of hospital in February and because he can do the stairs (two feet on each step and pull up) they didn't recommend a stairlift. Our stairway is also very narrow due to having a Victorian terraced house. Going down is easier for him than going up. I think at the moment it's the fact that doing it makes him breathless that's putting him off. He needs to realise that a bit of breathlessness is ok!

[Alberta56 in reply to Casablanca42]

They pointed out in yesterday's ELf conference that breathlessness is good for lungies. And they're the experts.

[Casablanca42 in reply to Alberta56]

Thank you for letting me know. I'll be sure to show that to him!

[beech in reply to Casablanca42]

Breathlessness is unpleasant, and I think all of us here hate it, but a bit is necessary (and just happens anyway) with activity to work your lungs, and keep them working.

He can take as long as it takes to get upstairs, but it is a really beneficial exercise for both his lungs and muscles. Not to the point where he feels faint or ill, but to a point where he then rests, gets his breath back and is able to tackle the next couple of stairs or a few more steps on the level.

Any activity that induces breathlessness is good and with time it should get a little easier.

[Casablanca42 in reply to beech]

Yes, I agree. I think it's taken him by surprise because he didn't have any breathing difficulties prior to the pneumonia earlier this year, so he isn't sure yet what is 'bad' breathlessness and what's good.

[beech in reply to Casablanca42]

And it is scary when it happens, especially as it is new to him. It will take him a while to trust that he won’t suddenly stop being able to breathe completely if he overdoes it. And that oddly it is both a necessity and an inevitability now that he has lung issues, but he can find a new way to live and cope with them. In time! But not by staying in bed and avoiding it. Good luck, this will be tough for both of you 👍

[Casablanca42 in reply to beech]

Thank you. His inhaler hasn't really helped today so hopefully better luck tomorrow, and I can get him on his feet a bit more.

[gingermusic]

I assume he has an inhaler in which case he should use it before attempting the stairs, that will help a lot and he can always stop half way to get his breath back which I have to do. Yes your right a bit of breathlessness does you no harm and is quite ok. He is so lucky that he has you there to help and encourage him, your doing a great job by the sound of things. x

[Casablanca42 in reply to gingermusic]

He only has one inhaler, and it's one he has to take once a day in the morning. The doctor at the hospital did mention a second 'emergency' inhaler but it wasn't on the list of discharge medication so the nurse couldn't issue one. I'm going to mention it to his GP and see what she can do because everybody here has mentioned having a 'rescue pack', and I think it would be a good idea.

Thank you for your support!

[gingermusic in reply to Casablanca42]

Strange that his inhaler is for morning use only, I would have expected it to be used again 12 hours later as well. Most of us are given a Ventolin inhaler for use as and when needed up to a certain amount a day. The rescue pack consists normally of an antibiotic and prednisolone to be used at the first sign of infection. Chat with your GP and see what they advise. He is very lucky to have you helping him so much. My best wishes Ruth

[Casablanca42 in reply to gingermusic]

I thought it odd, too, especially with the doctor initially mentioning having two inhalers. I wonder if they have just missed it off his medications list by mistake.

Thank you for that, it's very informative.

[gingermusic]

Your very welcome, Ruth

[O2Trees]

Hi Casablanca, I cant stress enough how important it is that he gets out of bed and walks around, slowly increasing the amount each day. His muscles will be very deconditioned and deconditioned muscles are not able to use available oxygen efficiently so that he will become more and more breathless when he tries to move/ walk etc.

See if you can get a referral for him from the GP for a pulmonary rehab course. The respiratory physiotherapists who run the course will work with him to help him get his fitness back. They work at the patient's own speed and no one is forced to go anything they feel they can't.

If he continues to spend all his time in bed the deconditioning of his muscles will just get worse and worse. If I were you I would not take food up to him - make some wonderful smelling dishes and tell him he needs to come down to eat them! Im only partly joking - it seems like you need to think of ways to get him to budge from that bed. Maybe his GP could have a word and explain that he is not helping himself. It must be much harder on you too.

[Casablanca42 in reply to O2Trees]

Hi, thanks for the reply and for the suggestions. I've spoken to him today about starting to do some more exercise, even if just around the house for now while he builds some strength back up, and he said he would. I'm working from home at the moment so I can make sure he does it.

I'm also going to see if his GP can refer to the pulmonary rehab course as numerous people have said it's been helpful.

Thanks again for taking the time to reply.

[Patk1]

Hiya.he needs to get up! Yes,have a rest,thn get up! Staying in bed,is risking clots,muscle loss + deconditioning.Stop reading Google.what yr reading is,at best,incorrect.

I think a diagnosis is a positive - it enables management of condition + correct meds.most of the care+ work required,is self care + following guidance.02 drops when anxious,when inactive( in bed!),among other reasons. Breathing techniques+ practise is v useful + u can read up on ' controlled breathing" techniques.also there's a helpline no. here,with nurses to speak to xx

[Casablanca42 in reply to Patk1]

Hi Patk, thanks for the response.

We're going to start on some exercising tomorrow; even if he just gets up and walks around upstairs every hour to begin with, it's better than nothing.

[Hidden]

You have received so much good advice about your partner's copd from those who are experienced in living with it. However, I am concerned that heart failure has been mentioned once and not followed up. When my heart failed in 2013 my GP and my respiratory consultant kept trying to blame my lung condition (bronchiectasis) for the breathlessness and extreme lethargy.Only when I insisted on seeing a cardiologist did it emerge that I had AF and dilated cardiomyopathy. The result of a virus infection that I had that winter. Proper medication has helped me live an active life since. It would be a good idea for him to be seen by a cardiologist, if only to rule this out. As others have pointed out, he really does need to be moving about and building up his exercise to help his emphysema but this will be doubly difficult if his heart is struggling. Also, has everything been done to ensure that he has good pain relief for his back. It's hard for you to be coping with this. Hopefully with the right diagnosis and meds he can take control of his own well being and give you a break.

[Casablanca42 in reply to Hidden]

Hi Littlepom, it was a surprise when we saw it on the discharge letter, that's for sure!

I mentioned it to the first doctor we saw on the assessment unit the second time he was hospitalised and she just said the echocardiogram 'was a difficult study' and didn't really explain further. He had an ultrasound on the morning he was discharged that he was told was looking at his lungs and heart valves but we haven't heard anything about it yet; it was only last Wednesday, though.

Two or three ECGs all seem to have been fine.

When we next see his GP I'm going to bring it up anyway, if only to highlight the lack of information we've been given.

He doesn't like taking pain medication because he worries if the pain is masked, he'll do something that will make it worse without realising. That, and he doesn't want to be reliant on them. Every now and again when it's especially bad he will take something for the back pain.

[Hidden in reply to Casablanca42]

What she meant was ' we need an expert to interpret the echo and nobody available can do it'Proper pain relief won't mean that he does things to hurt himself but will allow him to be active and to do gentle exercises which is crucial to his lung health and could help with his back mobility.

[Casablanca42 in reply to Hidden]

I think they were hinting at him possibly having PAPVR, but why it's taken 64 years to find it I'll never know!

Yes, I agree re pain relief. If he starts complaining about it again once we do some exercise, I'll mention it.

[beech]

I’m glad you’re going to follow up with the GP - sift out all the information given here and make a bullet point list so that it jogs your memory!

It would also be worth finding out if your practice has a specialist Respiratory Nurse - they are worth their weight in gold if you’ve got a good one who knows lots about respiratory issues and what is available to help a patient with those problems. Not all GPs have that in-depth knowledge. 😉

Your partner is lucky to have you so willing to support him in his health issues and care for him.

[Casablanca42 in reply to beech]

Thanks, beech. We're speaking to the GP over the phone on Saturday morning and I've started a list so we won't forget to mention anything.

Thanks for the tip on asking about a specialist respiratory nurse; I'll add that to my list!