COPD

[Hollyfoot]

My DM has COPD. 5 years ago she had pneumonia and was in hospital for a couple of weeks. She recovered reasonably well - as in still living alone, driving etc (despite being in her 80s) until very recently. About 6 weeks ago, she collapsed again and was in hospital for 10 days with another bout of pneumonia. She has been given oxygen for home use when she needs it, and has a COPD nurse visiting and a community matron. Have to say that the care she has received has been bloody fantastic.

However.....

She isnt recovering anywhere near as well this time as last. Her sats are regularly in the 60s - low 70s rising to the 80s whilst on oxygen - I know, I know. Although its fair to say that she has always had low sats. She does look visibly cyanosed though, which has only been the case since this recent illness. She has very little energy unsurprisingly and has sadly got a small pressure sore from sitting in her chair so much. She also has very swollen ankles from chronic heart failure. I've spoken to the GP who has said to expect further episodes of hospital admissions and that each time she will not recover to quite the same extent.

Obviously she/we have talked a bit about the longer term ie the sort of care she might need, moving nearer us etc. The thing that would most influence the decision making process is knowing how sick she is. Could her current condition continue like this for years, or is she so ill that this is unlikely to be the case? I know no-one can say 'Holly your Mum is going to live for another 3 years, 6 months' or whatever, but if her illness is such that it may be quite a short time, then she really wouldnt want to uproot herself to move nearer us. If people with heart failure and such low sats can potteralong for years, then it might be worth her putting her home up for sale and moving nearer us.

Anyone have any experience or advice on this? TIA

Hi, sorry your poor mum is going through this, and so sorry that you are living with it too, it is so very hard.

Following pneumonia reserve is reduced, functioning lung areas are reduced and "scarred", this reduces gas exchange capability.
This is on going, this is irriversible and it ultimately leads to death.

IME another chest infection or pneumonia will mean that the person does not recover. As reserve is low, the ability to fight infection is reduced.

I think that there is little hope of your mum going on for years.

I lost my nanna to copd, 2 weeks ago we lost mil, she too had copd.
again, so sorry for you love x

Thanks mrsnesbit, for your kindness and honesty. So sorry that you have lost two people

She really is much worse this time round and her quality of life is pretty crap. The NHS do seem to be treating her very proactively - talk of getting her a physio to help her get walking more, setting up transport to take her to stopping smoking classes etc - which has made it difficult to understand what they think her prognosis is. And that in turn is making it very difficult to plan whats best for her.

Her chest has been terrible all my life; in fact my Dad used to say that if he ever lost her in a shop, he'd just listen out for a cough!

I think that is the most difficult thing to deal with when the quality of life is so poor, and they are so utterly exhausted constantly when previously independant and full of chesty beans.
Despite a poor chest, my relatives never let it get them down or slow them down.

That showes just how very unwell they really were, when that spark for life had gone.
my relatives became depressed and withdrawn, just waitng for the end to come..soit seemed to me anyway.

I found myself praying for the end to come quickly in those last weeks...and i am NOT religous in any shape or form.

dark desperate days. i feel for you x

sorry for typos and sp errors, speed typing x

So sorry to hear about your mum Holly, i lost my dad to copd and its complications just over a year ago. He was diagnosed in the june and died in the december. Mainly it was all the other things that go with it and his kidneys started to fail. His ankles were swollen due to heart failure and he got a couple of infections within that time frame. I couldnt stand to see him deteriate like that. I know what you are going through.

Thank you for replying chipstick and so sorry to hear about your Dad. I think my Mum is starting to realise that this might be as well as she is going to get, which must be so hard. Just have to hope she steers clear of infections I guess, but the life she is living now isnt what you could really call a 'life' sadly.

I'm sorry your mum is so poorly. COPD is an awful disease.

COPD can be very unpredictable as we don't have any hard 'markers' for disease progression. Someone's lung function can be abysmal and yet they plod on quite happily, or someone can have decent lung function (especially their FEV1) yet a very poor quality of life.

If she's still smoking whilst being on long term oxygen and having repeated infections then her prognosis is not good I'm afraid. Her lung function decline is likely to be much more rapid.

Can you speak to the COPD nurse about End of Life care? Whilst being hard to predict they may be able to give you some indicators. Generally speaking a combination of repeated exacerbations (infections/hospitalisations) and oxygen requirements due to low sats, along with heart failure tend to mean that the person has respiratory failure and is unlikely to live more than a year (I stress that this is a generalisation as I don't know your mum's situation in any depth).

I wish you well.

I'm sorry that your mum is suffering, and you for that matter . Copd is a nasty disease, My mil has very mild copd, she didn't have any symptoms and she still isn't getting any. My mil was being checked for sleep apnea, and had a chest x-ray which came back as mild copd, she did have a LFT and it suggested very mild copd.
Take care love.

Thank you Sidge. She has now given up smoking I'm pleased to say.

She has always had a rubbish chest as mentioned before (all my life) and despite that,I would have said until now that she was definitely in the 'plodding on quite happily' category. Her sats were low when she was last in hospital with pneumonia (5 years ago), but they improved when she came home, which hasnt happened this time. On the whole she has been in pretty good health in those 5 years - as in driving, eating out, shopping etc and hasnt had any infections to speak of.

Chatting to her today she is more breathless than she was a few days ago which is worrying. Also the GP has increased her frusemide but there has been no effect on her ankles or increase nor has she noticed any more weeing.

It might be worth speaking to the COPD nurse, thank you; my only worry is that she would most likely seek my Mum's permission to speak about her, and I am almost certain that my Mum doesnt realise how ill she is and more importantly, would not want to know how limited her time might be.

Oh that's good that she's quit

I understand it's hard if you're not near her and can't be there when the nurse comes. And it's not a conversation that one wants to start

My dad has just been diagnosed with COPD, last month . Could I lose him very rapidly? I can't really get to the bottom of what his prognosis is - I don't really want to ask my mum as she's a retired nurse and has nursed many old people through COPD and knows what's coming .

Dad has never smoked - I don't understand how he got this bastard disease . He also has Type II diabetes (despite being as thin as a rake ).

Can anyone give me any advice?

Sorry Hollyfoot, didn't mean to hijack your thread .

Dizzy there are many stages of COPD and as a non-smoker recently diagnosed it may be that he has a mild form of the disease.

He may just need some inhalers to ease his symptoms and be monitored regularly to keep an eye on his lung function. You won't necessarily lose him very rapidly, it very much depends on his general health and how well controlled his diabetes is.

Hi dizzy My MIL was diagnosed with mild copd, and she to never smoked . Hers is very mild tho, and she doesn't get any symptoms at all, she is 71.
The dr said it wont be copd that kills her .
Has your dad been diagnosed at what stage? I think when the respiratory nurse does the spirometery test, she can tell what stage it is.

My step-dad has COPD, he was diagnosed with it in late 2010 at 52, it is a horrible, horrible illness that has forced him into early medical retirement and causes such pain to him.

I had never heard of it until he was diagnosed with it and I wouldn't wish it on anyone.

Thank you both - he's 78 (nearly 79), his diabetes is not very well controlled unfortunately. He is only on inhalers at the moment, but they are not making any difference so he has to go back to the doctor.

He is very breathless, can't walk far and has a persistent cough.

He had a massive heart attack nine years ago (when his diabetes was diagnosed) so also has a weak heart.

Sorry to hear about your mum. COPD is horrible. My mum was a heavy smoker and it resulted in her developing it. Like your mum we could hear where she was in public because of her cough.

I know it isn't what you want to hear, but the GP's description of the disease's progression was exactly what happened to my mum. I would try and spend as much time as you can with her and ensure that she is comfortable as possible.

A little update....

She went to the hospital today for tests. Apparently they took blood in what sounded like a capillary tube and checked her oxygen levels (I think). The first test read '1' which apparently they were very unhappy with. She stayed all day and after breathing lots of oxygen, it went up to '7' by the end of the day. She has been told she has to have different oxygen at home - no idea what all this means?

Sorry to all of you who have lost someone precious or who have a family member going through this. My Mum seems to think this is all a temporary setback, and for now, its probably best that way

Its all a bit more complicated than I explained previously as we have had a really complex relationship over the years. Probably best not gone into on this thread, but seeing her so ill is still desperately sad.

My FiL has COPD and a few years ago his lung function was only 20%. It's now gone up to 40%, which is a phenomenal improvement. He's in his sixties.

There are a few things which have aided his improvement:-

About 12 years ago, he had some kind of flu which made his lung functiontionality so poor. He could barely breathe and therefore could barely walk, get up the stairs etc. His doctor said he had to make a choice - more to a (warmer,) drier climate or he'd have less than a year left. He left the UK and moved abroad and for the time he spent there at least, he was able to have a relatively normal life. A holiday in the right place can help with a short term fix - places which are good are desert environments, some parts of Spain (can't remember where) and Alps are supposed to be very good. There are also salt caves/ which are supposed to purify the air or something and are good for a short term fix. Take a look at www.saltcave.co.uk/ and try googling 'salt pipe'.

7/8 years ago, he had pneumonia and he was given some strong medication - antibiotics I think - which seemed to remove an underlying bacterial infection he must have had for years and there were some improvements in his breathing. No one is sure why the underlying infection wasn't spotted originally, but might be worth seeing if your mum could have a thorough check up.

Medication has also improved in the past few years - there's one particular inhaler which he finds works well for him and increases his general lung health, but I think it's quite a difficult one to get hold of as the doctor's surgery is always prescribing the wrong one and he has to have it switched (he spends 50% of his time in the UK). Obviously, different people respond better to different medications but I can find out what he takes if you want. Bear in mind he still takes a lot of medication.

As a general point, my FiL's story shows that improvements can be made with a bit of trial and error, although he's lucky enough that he has a business he can manage remotely while he's not in the country so that he is able to fund his lifestyle changes. Having said that, until about 4 years ago, he and MiL were living in a very remote desert location and were sacrificing a lot basically for him to be alive, but given the improvements over the past few years, they now have a lot more flexibility and live in a place where there is a large Anglo community and they are very happy and settled.

oh and obviously age is a factor so can't see you leaving the country with your elderly mum, but if she is still able to holiday, it's worth researching a good location for her lungs

So sorry hollyfoot to hear that your mum isn't well. Sending hugs to you.