Breathing advice please

[chloe0612]

Hello all, hoping for some advice please.
My mum was diagnosed a month ago so everything very new and we are still learning lots.

She has not had any problems breathing up to now. She was offered NIV to use at night on first respiratory nurse visit two weeks ago because of some outcome from a blood test done then and there but was overwhelmed by complexity of maintaining and using the machine so nurse took it away again.

she has had difficulty breathing for the last 24 hours after a sore throat which started yesterday. Sats are 99%. We have called 999 as not sure what else to do but they don’t know when they can get out to us. She can speak with difficulty and is breathing steadily and is calm.

I am not sure if episodes like these are common/to be expected. And if there is anything else we can do to help symptoms.

[Claireflo]

Sorry i didn't see your post before now. I hope you were able to get some medical advice. As you mention your mum had a sore throat it may be that a cold or possible early signs of chest infection are affecting her breathing. The inital diagnosis is very overwhelming, it will settle down. May be worth having the Respiratory nurse back out in the new year to revisit the NIV. It's reassuring that the sats were 99%.

[Ellie]

chloe0612 A warm welcome to the forum, Chloe, sorry you had to make your first post in such worrying circumstances.

I sincerely hope your Mum has been seen by a medical professional at this stage and has been reassured - hopefully she ‘just’ has an RSV or infection.

Seeing the NIV machine, hearing the air whooshing through the hose and wearing the mask for the first time can indeed be overwhelming and some people need to be introduced gradually to it - that nurse should have picked up on cues that it was too much information, delivered too quickly for your mum.

There’s no point in me saying that there’s not much to using the NIV machine - it is pre-programmed so it’s a case of switching on the machine and, at most, pressing Start - or that putting on the mask is straightforward once she has the most appropriate mask, or that rinsing the mask etc isnt onerous at all, they're things your mum needs to feel comfortable about herself *IF* she decides to revisit NIV in time.

This is a good website with real life stories about people with MND/ALS using NIV, not using NIV and delaying using NIV myBreathing xx

[Purpletunes]

Hi chloe0612,

My mum was given an NIV. We were told to gradually introduce it during the day so that she'd be able to use it at night.

When they gave it to her last year she could barely tolerate it for a couple of minutes.

We started with using it for 5 mins at a time and then slowly increasing her use.

As she began to spend more time in her recliner chair (not in the optimal position for her lungs) she felt more comfortable using it through the day, more like a comforter.

Early this year we had a similar issue, of her waking up at night and being completely restless. She agreed to try the NIV at night and that worked to calm her down.

Like Ellie said everyone's experience is different.

It's very overwhelming when you're newly diagnosed. It's also different when you're the carer, you want them to have everything that will help them be most comfortable but sometimes equipment/devices are often introduced before you need them.

[chloe0612]

Many thanks for these replies it is a great help to hear others’ experiences and I appreciate people replying on Boxing Day! 🙂
The paramedics came out to us last night and suspected an RTI. They were concerned about noise when breathing in so did consult out of hours GP who was happy there was nothing suspicious. I think our MDN nurse is back working on Thursday so will give them an update. Respiratory nurse is due back in 3 months but would be useful to have the NIV machine in the house so my mum can try it with help if she feels like it. The main problem is that her hands are very weak and she couldn’t close a drawer on the machine properly and also lives alone so the idea of cleaning it everyday seems like a big thing.

it is a bit worrying that things appear to be deteriorating even since the diagnosis a month ago. First breathing issue she’s had but also dexterity in hands has got a lot worse. Concern about things progressing quickly as my mum lives alone and is 1.5 hours away.

[Ellie]

That's relatively good news Chloe - has she been prescribed antibiotics for the infection?

... also dexterity in hands has got a lot worse. Concern about things progressing quickly as my mum lives alone and is 1.5 hours away.

That's really difficult, I'm sorry - losing manual dexterity impacts on so many basic tasks including preparing meals and being able to eat, using the bathroom and dressing, that your mum will need help pretty soon.

Has she an OT?

May I as if her mobility is ok? xx

[chloe0612]

She wasn’t given anything by paramedics so doesn’t have antibiotics. They advised contacting GP when next open on Wednesday if needed. She is feeling better today so hopefully will improve over time.

she has been referred to OT but no appointment yet. She can walk about 100 metres with a stick, can’t stand unaided. Has complete right foot drop. Has trouble with stairs but can still get up them.