Constant respiratory problems

[StephWx]

We have been told my Nan is at the later stages of this horrible disease and it’s becoming more obvious day by day. Her oxygen levels seem to be pretty much all over the place. Sometimes it’s as low as 70 and then it can shoot back up to 90. She is now on oxygen at home full time as she refused to go into hospital. My nan has just finished a weeks antibiotics for a suspected chest infection, but she just seems very chesty all the time. Constant bubbly chest because she is unable to cough. She was treated twice in hospital over the months with aspirational pneumonia and was given access to a cough assist machine when she was admitted, this seemed to work absolute wonders, but we have unfortunately been told this isn’t available in the community and only in hospitals which is a massive shame as it was really helping my Nan. I’m just wondering if other people are experiencing these respiratory issues and problems with oxygen levels with you’re loved ones??

[Hellebelle]

Hi StephWx,

Yes, I am afraid this all sounds horribly familiar. Dad was not able to cough towards the end and we were told the same thing about the cough assist after a stay in hospital with aspirational pneumonia. The only thing I can suggest if you haven't already, is to see if you can get help from the palliative care team either at the hospital or hospice. We found the hospice very helpful as they operated a hospice at home and dad could therefore have many of the services normally only available in hospital at home.

Wishing you all the very best.

[Diane831]

My husband was fortunate enough to be allowed a cough assist and a nebuliser at home after having had them used in hospital, but perhaps the fact that I had been a physiotherapist in the past helped, and also that we were not too far from a specialist respiratory centre who do support people in the community with a range of different breathing issues. I assume that different areas have different funding issues. I agree that getting referred to the hospice would be a helpful thing as they are really great with symptom control, and they do support at home as well.

Diane

[Fatwallet]

So sorry to hear your nan is going through this. My husband has a cough assist machine at home that we use each day so it is not only available when in hospital. I would suggest you speak with her consultant.. is it possibly because she is on oxygen that they don’t think it is appropriate? I would certainly ask the question. Take care, Shirley

[StephWx in reply to Fatwallet]

Hiya, no unfortunately we have been told that our community don’t supply cough assist machines, think it’s the cost more than anything. She has been given a nebuliser and an inhaler, also carbocestine 4 times a day. But we know she would benefit a lot more from using a cough assist machine as this was really helping her when she was in hospital.

[Fatwallet in reply to StephWx]

It was the hospital, through My husband respiratory consultant that arranged fir the machine. We where shown how to use it at our appointment at the hospital and then brought it home with us the same day, take care

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Hello I was curious so I looked up the machines on Google and I'm guessing they cost a couple of grand? I also found an article that suggests that they are really needed for other conditions like muscular dystrophy but people don't always get given them. Which seems like a scandal in the making. If all else fails with the hospice etc, I think you might have enough to go on here to go for a crowdfunding page, and/or go highlight this in your local media - the BBC news website takes personal stories too. ( Just an option- injustice is starting to make me quite pushy 🙂) Kx

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Hello again I meant to say I wonder if there is an elderly people's advocacy charity in your area, it might help to have them on board. I know the MSA trust has an advocacy worker I'm not sure if she deals with this area though Kx