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Hughes Syndrome - APS Support

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Not home yet

judes
judes

Well what a to do I’ve been having still not home

I was in supported housing for intensive physio etc

Both the OT and physio were concerned that I was getting very breathless on exercise etc so measured my oxygen levels which were in the low seventies, high sixties.

With oxygen levels so they were not prepared to take responsibility for my care which I fully understood.

So back to hosp medics are still trying different things when all I really need is oxygen when walking about

To make life even more interesting I have cellulitis in one leg and more of a concern I had a slight stroke tho fortunately doesn’t seem to have caused too much damage, they called my son in and have chatted to him about the way forward.

Which is good as at 24 he’s still quite young to deal with things like this, my former partner had moved up this way not too happy about that but at least H has someone to talk too, and not just the cats.

Thanks for reading another waffly post

Love and hugs

J

11 Replies
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Hope you start making progress soon judes take care xx

Stay strong!

Sorry to hear your struggling with your health at this present time Judes I hope you feel better soon. At least it was only a slight stroke which was a blessing but frightening nevertheless.

Your in our thoughts and not waffling we like to hear from our fellow members on here. Jill Xx

HollyHeski
HollyHeskiAdministrator

We dont mind how ever many posts you put on here, at least most of us understand the complications of APS, more than some medics! Specially the ones that have seen you!Presume your back in hospital and not in supported home?

Are the antibiotics helping the cellulitis?

Is your INR back at good level, to stop another stroke?

Now oxygen, you've had a massive infection and its it's going to take time to heal, OT abd physio know that but sounds like they're panicking a bit, although 60/70s is low, what is the level at rest? That's what they need to work on?

If they can get you to an acceptable level, high enough to sustain say making a cuppa, then that's a start.

Keep strong and persevere, you can overcome this, with just your sense of humour alone.

Sending you a big hug xx

Thank you so very much means a lot to me.

My resting rate is quite good at 90/92 on a good day it’s just when I start to move everything makes a downward dive

My INR has been over the last month has been erratic but that’s not unusual

A few years ago I ended up in itu with pneumonia, because I was in there a wee while I had PTSD afterwards one of the images I had was a big orange fire ball surrounded by black stuff had the same image this week with my stroke I thought if the stroke doesn’t kill me this image will, really scared me. Strange when you think you’ve put every thing behind you it comes back to bite you.

I think I’ve used up all my nine lives now

Love and hugs

J

X

Thank you so very much means a lot to me.

My resting rate is quite good at 90/92 on a good day it’s just when I start to move everything makes a downward dive

My INR has been over the last month has been erratic but that’s not unusual

A few years ago I ended up in itu with pneumonia, because I was in there a wee while I had PTSD afterwards one of the images I had was a big orange fire ball surrounded by black stuff had the same image this week with my stroke I thought if the stroke doesn’t kill me this image will, really scared me. Strange when you think you’ve put every thing behind you it comes back to bite you.

I think I’ve used up all my nine lives now

Love and hugs

J

X

MaryF
MaryFAdministrator

Your spirit is shining through, I am so sorry life is currently tricky for you. I hope over time with the right care you will continue to progress in the right direction. Do keep writing, it is good for you and certainly good for us to hear about your progress!💜 MaryF

I think i'd be ready to jump off a cliff if I'd gone through all that you have! I hope you can turn the corner properly soon and I'm sending a little sunshine from Australia-30c today :)

You see many people with copd that have their own small bottles of oxygen they can carry discreetly about with them.Can that not be arranged for when you go home.It would be a great help

Hang in there. I hope thatFRA's observation that portable O2 may make it possible for your life to return to a more normal. 🤞

KellyInTexas
KellyInTexasAdministrator

Hang in there, friend. We depend on your updates - we are one family here.

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