The magical express pass

Hahahaha. Almost 2 weeks ago, on the 10th of June I was at the hospital for my cardiology appointment with, for lack of better terminology, the electrical specialists of the heart. After going on (and on and on) about risks and pacemakers and open heart surgery and DVT we finally got to the wait time. It’s a specialised field so I know there are only a few people who can do the test/procedure and because I’m high risk – only the boss wants to touch me (and let’s be honest – he’s a Kiwi from Wanaka so I’m good with it).  Brace yourselves, the wait was going to be, 3-6 months. I know, right? I’ve never had to wait that long because of my special circumstances. Out of EVERYTHING that comes with my illnesses – that’s the one thing I value, my hospital express pass. 6 months! Well, shit.

This meant a couple of things: first off, getting travel insurance that will cover my health will be almost impossible. Not so much of a problem for New Zealand because of our reciprocal healthcare agreement, but a real problem in Japan. Well that blows – still not going to stop me though. Secondly – our plans, we seem to need to keep pushing them back and back because of my health and that is very very frustrating. I started this whole journey because I knew that there was something wrong and I wanted to be proactive and responsible. You know, an adult. I honestly planned to be moved by August – but it just hasn’t worked out that way.

I slapped a fake smile on and said “oh, six months”. The intern replied with “if you’d like to get it done sooner we can refer you to a private specialist” I answered with “no, I’d rather live through the procedure, thanks”. Funny, that usually gets a laugh out of the bowel team – not so much cardiology. They just looked at me in bewilderment… different experiences I suppose.

I did seem ungrateful – I know that. 6-months is actually a Cat-2 wait time – and I’m in no immediate risk of dropping dead. So I walked out and remembered – I’m not all that “special” in that department and I got myself ok with the longer wait… oh and all the other risk shit they were talking about. I did elect to go on the fast call up list – so I could be called in with only 3 days notice (which is fine with me, less time to think about it).

I don’t know if I mentioned it in my last post on my meeting but our “interview” went for almost 2 hours. That’s a long time to spend with a patient, which in itself puts you more at ease. After the appointment we went and had our “lunch” which was meant to be breakfast between test at Zaraffas and talked about the situation more.

Yesterday at about 2pm I received a call that I honestly didn’t expect. It was the hospital calling me in for the procedure late July. Now, this wasn’t an emergency call up… this was a regular surgical call. It seems that my case had been reassessed and when they did the math and found out that my particular collection of conditions, in the particular positions in my body in which they’ve appeared amount to me being, as best as they can tell, about 1 in 5,000,000 – my express pass was activated once again. As usual the nursing staff were worried I’d pull out – simply not the case after I’d opted for this in the first place. I didn’t have to come clean about my symptoms, I could have concealed them until it effected someone else. I’m set to go in with a room full of students and two trauma teams once again – another full house. Except this time I have to be awake. Now the pain doesn’t worry me so much cause, well I’ve done worse to myself (injuries) to be honest, but the fact a whole room of people are going to be effectively starring at me and a screen with the live footage next to me, that kind of turns me off. My rarity is both a blessing and a curse when it comes to the attention I’m given… it seems like everyone wants to watch strange little Crohn’s girl go through the weird medical procedure – even if it’s unrelated to her Crohn’s. While being a spectacle doesn’t really appeal to me, students learning really does – because if I’m frank, they’re the generation that’s going to cure Crohn’s Disease and break the hold of auto-immune.

I’m not giving exact dates because I hate being in hospital – I hate having visitors… I hate the way people look at you and talk about you. It’s the hospital, not the morgue. I’m not dead, I’m just getting some work done. Plus given the fact I’m cytotoxic, more people usually means more chance I have to stay in longer than the 5 minutes I actually want to be there for. I know it’s really offensive to some – but hey, my body, my wishes. If people get offended by it, they have the problem, not me.

I don’t really know who I’m going to tell yet… Work already knows cause it’s not the best time for them (but oh-well, I’m pretty sure that intermittent tachycardia is pretty inconvenient for me too)… out side of them and the few people who are closest to me I’m not sure anyone really needs to know.

While I did elect for this and I do want it over and done with – I’m still not keen on what’s to come. I don’t want to stay in the hospital especially with no anti-anxiety medication. I kinda wish it had of been the 3 day thing – my mind tends to play tricks on me the longer it has to mull situations over.

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