Bagpipes and A&E

[granny-b]

On my last post I left you wondering if I had my personal bagpipes on my birthday and how my blood pressure / GCA was resolved.

Well my birthday bagpipes didn't happen. George was unwell, he didn't even take any haggis piping bookings. He seems to only play at funerals recently.

As you might have guessed the second matter from the title.

I woke up in the night with a bad head, GCA sufferers would recognise. Knowing I had a high CRP I decided this was a red flag so got OH to take me to A&E renamed ED whilst I wasn't looking. I was already on 25mg pred having been diagnosed with it in my aorta and arches, my carotid etc, ie large vessel vasculitis last year.

Everyone there was wonderful. I took paperwork that might be useful but just needed my blue steroid card and my latest medicine list. The main plus was that they accepted that I actually knew fully about my condition and each person was pleased to listen to my summary. It is helpful that it does what it says, i.e. giant cells form in your arteries. My bp went up to 207 (stress) and my CRP was up to 68.

They gave me another 35 pred and a bp med then sent me to a clinic to decide what else to do.

When my turn came in clinic they rang the on call rheumatology who luckily was my consultants registrar who is one of the good ones. She requested a urine sample and a chest x-ray to rule out an infection, when they were clear they were asked to organise/request an ultrasound (main arteries) and upped my pred to 45 daily ufn.

Expect to hear something tomorrow...

Learning points.

1. Keep your meds and blue card up to date.

2. Know as much as you can about the condition as it applies to you. You have a rare condition, help them to help you with information without making demands, ie I didn't actually ask for more pred!

3. No matter how rotten you feel or how long you have to wait.... Be nice. I was seen quickly, treated well and politely.

Thanks to you all for giving me the confidence to take my 'red flag' to ED.

Xx

[Ruadh]

Well done you granny-b - had my heart in my mouth reading your account. Bravo - The pipes wa there skirling awa, just a tad quiet this time... Take care -

[alvertta]

Great tips. Thank you.

[granny-b]

I meant to also ask if anyone knows of research that links a flare or initial GCA diagnosis with stress. Apart from patient (us lot) views.

[GOOD_GRIEF]

It always helps to give as much info as you can to emergency staff. The more you can help them, the faster they can respond.

Hoping to hear both sets of pipes are back on track.

[SheffieldJane]

Thanks for the good advice. You handled it all beautifully. Let us know how you get on.

[Constance13]

You poor thing. You managed it all very well though.

“ED” - why the change? Is that general or only in your area?

[granny-b in reply to Constance13]

I suspect it is to discourage those who think of it as a weekend GP but don't know.

[PMRpro Ambassador in reply to Constance13]

My daughter refers to ED rather than A&E these days...

[PMRpro Ambassador]

Good one - what hospital was it btw? It's handy to know the ones that are worth recommending!!!!!

[Jackoh]

Well done you! You handled that all so well. Thanks for the tips x

[granny-b]

I was at the Norfolk and Norwich University Hospital where my consultant is the magnificent Dr Mukhtyar who is a vasculitis specialist and a gentleman.

This amazing man found time to see me this afternoon (NHS) and did an ultrasound.

Thank heaven it was clear although there was nonspecific evidence of infection (raised white blood count) which is causing the raised CRP. I had a chest x-ray and urine on Saturday which were both clear.

I wouldn't recommend him for 1 reason only - because I don't want to share!!

My appointment was rather late because he scanned someone else first who had lost sight in one eye over the weekend and may not get any improvement. Reminded me of why I had gone in on Saturday.

I left at 6.10 relieved and happy, whilst he went back to write some notes up. Everyone else had gone home.

[Ruadh]

Good man - giving up his w'end. Glad that all was clear granny-b. Relief all round, yes ? Now get some R&R, and refreshing sleep. Take care -