Diligence is paramount: Hi all I... - Multiple System A...

Multiple System Atrophy Trust

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Diligence is paramount

Paul_and_Sue_Wood profile image

Hi all

I thought I would post a recent experience for you all to learn from.

Sue's journey started in 2009 and we are still on the road. During that time we have had numerous hospital visits with aspirational Pneumonia ( something stuck in the long after choking and starts an infection) Plurecy, UTI, respiratory failure and racing heart rate ( 170bpm at rest). During all this, I have learned to monitor Sue's vitals and do so daily to watch out for any changes.

She has been sleeping a huge amount near 22 hours a day and struggling to hold anything as the shakes have got a lot worse. This has resulted in some liquid spillages and choking even when using special cups, so we now have sealed plastic cups and specials straws ( Pat Saunders Drinking Straws amazon.co.uk/gp/product/B00... these limit the flow of liquids.

What I didn't spot was that Sues choking has started a chest episode as her vitals remained normal. With her also sleeping a lot it was difficult to spot anything. The signs eventually were a wheeze that got worse, difficultly communicating and labored breathing, this all occurred within 3 hours!! Luckily I have an emergency pack of antibiotics and steroids so i pumped her on antibiotics and then rang the GP the next morning.

After a telephone consult running through symptoms and history of events we put her on steroids also. Temperature still normal but O2 levels dropped but not into my "red" zone. During the next 2 days sue slept near-constant and struggled to breathe and speak with one of her carers admitting later she wasn't expecting to see Sue again!!!! I was also very worried as Sue had started to lose her complexion......aarrgghh...

The good news is Sue pulled through and is near normal now although the sleeping is still 20 hours a day with communication is ok as she can still tell me off!!

Sorry, a bit long-winded but just trying to let everyone know, be diligent and watch like a hawk...

See you soon

Paul

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Paul_and_Sue_Wood
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5 Replies
Yanno profile image
Yanno

Hi Paul & SueSounds like you’ve had a tough time of it of late. Your comments about vigilance are so right. Jax is recovering from a UTI which we first only found by keeping a watchful eye and regular testing.

We have to say the Pat Saunders Drinking Straws you mentioned some time ago have been brilliant. So much better for Jax to drink with these. We use them with a Wade Dignity cup where the ‘spout’ holds the straw in place.

See you at the 4Counties meeting this week! Take care both, Ian

Floosie5uk profile image
Floosie5uk

Hi Paul, glad to hear sue has pulled through! Can you tell me what vital signs you monitor? Martin is hopefully in the early part so I’d like to be prepared. Many thanksSue

Paul_and_Sue_Wood profile image
Paul_and_Sue_Wood in reply to Floosie5uk

Hi,

I monitor Pulse and oxygen levels using a finger monitor and also temperature using an ear temperature reader.

I also have urine sticks to test for white blood cells and more.

I agreed parameters with the GP so if she falls out then it's a call to the GP.

These items are available at Amazon.

These only indicate a problem but usually it's listening and asking Sue that's a first sign.

Hope this helps.

Paul

Floosie5uk profile image
Floosie5uk in reply to Paul_and_Sue_Wood

That’s brilliant information, thank you so much Paul!

Annietutt profile image
Annietutt

What a worrying time you have had Paul. Your advice on how to be diligent over monitoring vitals etc. Was very helpful, thank you. I am pleased to hear that Sue has improved.

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