I got a letter yesterday saying that next Friday afternoon I am to have an endoscopy. This came out of the blue. Yes, I've had a gastro referral, but I haven't seen them yet and my GP didn't indicate that I would need them. Allow me to list my frustrations :
1) One week's notice - assumes both that I and the person I will need with me to leave afterwards will not have something else planned *and* that as someone with a complex medical picture I won't have to clear / discuss this procedure with my other health care providers
2) The information leaflet was shockingly bad - not convinced I would've know what the procedure entails if I didn't already
3) The leaflet is very much trying to persuade me to have anaesthetic spray not sedation. I imagine (especially as it'll be a Friday afternoon) that I'll have to fight to be sedated - necessary because the spray wouldn't work on my EDSy throat and my oesophagus has horrible spasms which are likely to happen and I would rather be out of it
4) It won't find anything - I've been on omeprazole for over a year and I'm now on prokinetics. There is nothing in the information about stopping these meds, both of which are pretty effective, so anything they do see will be incidental to the actual problem. I don't know whether to stop them today - tried to phone to ask (normal guidance is to stop anywhere from 2 weeks to 3 months before) but couldn't get through. There are other problems that they might see (e.g. dysphagia, hiatus hernia) but might not record if that's not the reason for referral.
I'm not hugely scared about the procedure itself - yes, I'm more likely to have complications (e.g. perforation) due to my EDS but it's still not hugely likely - and if it does, a hospital with operating theatres and a gastro team is among the best places for it to.
I'm scared that someone will pull one of my joints out when I'm sedated (I'm especially concerned about my neck) and that my weird nervous system reacts oddly to medications, particularly sedatives - making me extra hard to rouse, or mucking up silly little functions like, y'know, breathing and circulating blood.
I would feel most comfortable if it went like this :
- I get to talk to the person doing the procedure about the specific issues that they will have to bear in mind. I would like everyone who will be part of the procedure to be told this stuff.
- Beanie comes into the room with me so that I know someone is keeping an eye on my obs and joints for me - because it requires a degree of experience
Beanie thinks that this will put their backs up and that if something's happened her being there won't stop it. I honestly don't think I'm being overcautious. It is not difficult to do me major damage.
I think I will chat to them, and if they're ok then I'll let them go ahead, but if I'm not comfortable Beanie comes in or I don't have it. I'm open to other opinions though, especially if you've had one before.