Self-advocating

[123-go]

I’ve posted before about self-advocating and after reading Kendrew’s recent post about her long battle for a sound diagnosis I’m prompted to relate part of my own recent experience.

First of all I will mention that the rheumatology clinic I am with has had some changes over the past few years (enough said!) and I began to question my own knowledge of large vessel vasculitis (ascending aorta aneurysm) and its management. Everything I’d read from reliable sources- not least Healthunlocked and The British Heart Foundation and straight out of the mouth of an eminent doctor now retired - recommended annual screening with echocardiogram and as I haven’t been screened since since 2022 I would like to know the current state of play not least for peace of mind. At last my consultant agreed to refer me to cardiology. However, since that day several months ago I have heard nothing; I’ve been expecting to see pending appointment in my NHS app which I open frequently with fingers crossed. A few days ago I decided to ask my new to me GP for advice and yesterday I had over half an hour with him talking about my concerns. He has promised to arrange an echocardiogram for me. To be continued 🤞.

I should say that I don’t have any untoward symptoms but aneurysms are often silent until they’re not!

[Mooka]

Referrals often get lost in the system. Always best to check with secretary or nurses if you haven’t heard. Good luck with your echocardiogram.

[123-go in reply to Mooka]

Thank you, Mooka.👍

[Obscureclouds]

like you I had read that regular scanning of aorta and aneurysm checks such as MRA were an important part of LVV monitoring . Particular in cases such as mine where initial symptoms were rather vague. I mentioned it to my Consultant who just said in due course so I’ll wait and see what happens when I’ve completed a year of my journey.

[Grammy80]

You are a great example to all~~!....isn't it amazing when persistence gets results? We, every single one of us are worth it. If your phone isn't ringing.....ring theirs, I say~! Good luck with your echo.💞😉

[123-go in reply to Grammy80]

Thank you, Grammy. 🌺