I had my obs done by Karen, who is one of the Cardiac Liason Nurses, she was lovely and we talked a bit about what's going on and she said that she was going to try and get some more information on an approximate date for me.
The appointment carried on as normal, Echo, ECG and then wait to see the consultant. Now, I know this is necessary for the number of patients they have to see each day, but having only met my consultant who I'm now under (it got changed about 18 months ago) once, at this time last year, I was a bit frustrated to be seeing the other person they have that sees half of the consultants appointments. I know they are still just as qualified and lovely people, but quite frankly, they are not my consultant and usually seems to be a different secondary person each time and the lack of continuity isn't helpful.
I had to explain the fact they'd wanted to move my surgery forward a year and the fact they're now trying to fit it in the gap between finishing down here in Kent and starting back at Uni in October, for what felt like the millionth time. Surely my consultants should know what's going on?! I asked if I could just quickly see my Consultant again since I've only seen him once previously and the other Doctor kindly obliged and he came to see me.
In all honesty, it wasn't really worth it. Regardless of the fact that I'm having surgery in a months time, the whole thing was treated like there was nothing different to last year and that there wasn't really much to say to me. My consultant said that they had no control over the surgery and didn't even seem sure that I would be having it so soon, even though it was him who insisted last year that it couldn't wait a year.
They then told me that they wanted Karen to speak to me again, turned out it was about dates, which she'd already talked to me about. She tried to ring the relevant person but they seemed to be out of the office, so she said that she'd email her and copy myself and my consultant into the email she sends. It still hasn't arrived.
I usually have such excellent service at Glenfield, but ever since being told I'm having surgery I've had the necessary appointments but it all seems so vague. I know that they can't tell me a date until much closer to the time, but I was still expecting to have a bit more of an idea what's going on.
I just want some clarity and to find out whether I'm ever going to have this bloody operation and if it will be at the time it should be. It already feels like I've put my whole life on hold and tried so hard to still plan things to enjoy this last Summer I have before entering the wide world of Being An Adult. I will be devastated if it all gets changed and moved yet again. I'm usually a very organised person and plan big things like this months in advance. I can't deal with not knowing what's going to happen.
Anyway, on a lighter note, my lovely friend Hayley has made a new sub-group of the charity Patches Hearts, which is aimed at adults, as there seems to be far less support and networking for adult CHD patients in comparison to children's support. If you are a CHD patient, go on Facebook and search for 'PATCHES- Bravehearts'.
Also, in a weird turn of events, a lovely school friend of mine Emily (who I knew had a CHD, we joked about the price of the schools insurance as they took BOTH of us away at once on a school trip to Germany) and I have been brought back into more regular contact as we both are now having surgery soon. We used to speak a lot before we went off to Uni, but never really talked much about our conditions after the initial conversation as our conditions had no effect on our lives at that point. We've both now had the our conditions brought back to the forefront of our lives and I'm really looking forward to seeing her when I move home for Summer.
Take care, everyone! xxx
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