12 May 2010

do you really want to know......

about my day?

im sure you can find other interesting things to read about on the net.

the obnoxious consultant about turned and became almost human. he read the letter from prof g, asked how i was!!!, i came away with an appointment to have a barium meal, (lucky old me eh, i did get out of having a snippy snappy camera down my throat, that can wait till it has to be done), and a lung function test, due to my inability to walk more than a few minutes without getting out of breath.

on a more shitty note, im hoping that writing this down will rid the demons from my head today. my aunt had to have an aortic valve replacement when she was 21 and very sadly died. a few other close relatives had shit ends too. im going to mail the prof, to ask whether the reason for my inability to walk far is due v-eds. hopefully he will reply that im a stupid women who reads to much. fingers crossed im stupid.


Coffeecup said...

Hi Em, you're very far from stupid indeed. It's your right to ask questions about your own body. I just hope you get them answered without being patronised by Mr Snooty there. It's horrible and tragic that your aunt died so young but that kind of surgery has come a very long way in recent years. Such ops are now routine where once they were experimental and very risky. I hate it that you're still having to go through more tests. At least they're working on your behalf hun. Stay strong, you are an amazing, smart, cool headed and wonderful lady! xxx

Achelois said...

I think you are brave to email and ask about vascular eds. Although not sure why this didn't come up in the appointment with him on the medical history front.

I am so sorry about the sad death so young of aunt.

It may also be worth looking up bronchiestastis not saying it is this on not being able to breath but google it along with ehlers danlos - actually scratch that. Ask the Professor about v-type and follow that line of enquiry.

You are being very brave em - to face this is very brave.

Of course we want to read about your day hun.

Nechtan said...

Hi Em,

Sorry to read you are having a hard time of it and hope things pick up soon. I think you are quite right to mail Prof G and don't think you are being silly as you have reason for answers. Its not some whim or random thought but based on family history so ensure they do take you seriously. If nothing else it will give you peace of mind if they can at the very least check that out.

Hopefully if you can get tested then the breathlessness will prove to be anxiety or ME/CFS related which is very common. In my case, which is apparently just anxiety until someone medical tells me any different, the most I've managed to walk in the past 3 years is 2km and that is getting very out of breath and exhuasted. But with family history though I think previous causes should be eliminated first and they should not be allowed to fob you off. Hope you get some joy with the mail.

All the best


All the best


diver said...

Sure, I want to read about your day :)

CoffeeCup makes a good point about medical advances in the last 50 or so years. You're in a whole different world to what your poor Auntie entertained!

Chin up Em, one day at a time and all that ...

Em said...

hi cc

oh i am a bit stupid. thats what my mum thought that surgery would of improved but she died from encarditis (sp) which is still a common occurance today, its a bacterial infection. hope your ok. xxxx

hi achelois

me brave !!! no, no, no, as i said im very stupid theres a fine line between the too. i left the mail for a while, i just could press send. now its done, im sure he will say that im a silly bugger. heres hoping. sorry your going through a tough time at present. xxxxxxx

hi nechtan

i used to be ok, when walking a few years back, although the last five years my joints hurt. so to find out whats wrong will help ithink, or maybe not i just dont know. good luck with your photography. xx

hi diver

one day at a time indeed ive been living by that saying for a few years now. xxx