The first Marf appointment

In some ways, you would think I’d never been to a hospital before. The night before any appointment, my body is overcome with anxiety. It gets me every single time. A sleepless night + a morning full of extreme nausea and vomiting always seem to greet me, and I go giddy thinking about having to step foot into an appointment for myself.

I don’t even know why this occurs. I guess this time I had so much hope that the specialists would be “good” that I suppose I just didn’t want to be wrong. My stubborn self wanted to prove the many people who have told me the NHS is worse than the NZ health system. And by golly gosh, I certainly am not oblivious to the faults of the NHS (I did spend four years studying health systems!) but for specialist care for rare conditions, I stand by my point that it is a lot better. And this appointment reaffirmed this for me in ways which I never expected.

After a two hour drive, I nervously sat staring at the clinically blank walls. Elliot held my hand to stop me from shaking; the unknown of what was going to happen scared me. I just sat there, feeling sick, with a cold sweat and consumed by thoughts. I couldn’t stop thinking about the fact that I’d packed up both of our lives for specialised health care… and I was suddenly overcome with a ridiculous amount of doubts. It was almost as if I could hear the ticking of the clock while we waited for my name to be called. But I could’t have asked for a better appointment.

First of all I had an eye test, which are always a less than ideal part of having Marfans. It almost feels like a needle is being put into your eyes, but the technology they use to see the different nerves never ceases to amaze me. I have to go back to hospital next week to have a full eye test however, as I failed the basic vision test, and my lens has shifted slightly.

I then had an echocardiogram (an ultrasound of my heart), which showed I have GOOD heart function, and steady aorta growth (for those of you who don’t know much about Marfan, this is the news you ALWAYS want to hear). My valve will need replacing at some point, but not any time soon (double score). And for the icing on the cake, my medication cocktail was switched because of new research (the geek in me got super excited learning about the research that is currently going on and different findings that are emerging).

The specialist who saw me was SO lovely. It is not too often you find a doctor who has the want/time to sit down with you. He assessed me for a little over an hour, and I will go back in 6 months for some more tests. Hopefully because I have been once I will not be so nervous next time! I was in clinic for a total of four hours, and I am confident that I will be looked after here… so rest assured to all those who worried my care would not be good!

I think sometimes it’s easy to get caught up in doubts. It can be so frustrating when you are going through a rough time and someone says to you, “don’t worry, everything happens for a reason.” And to a degree I agree with this statement –  but that doesn’t make tough situations or decisions any easier.

But then when something like this appointment happens, when you get a wee way down the line, it is an amazing feeling to realise why something happened/didn’t work out.

For example, moving back to the UK was a hard decision for me, I very much felt like it was a selfish move. And in some ways it was… but I wanted to be seen by (and hopefully one day work for) a leading excellence centre for Marfan Syndrome, to make sure that I had the best available advice and care. In my short life so far, I have lived by putting everyone else first, but throughout my recovery I learnt that I need to “get well” in myself before I can expend energy on helping others. I struggled with this feeling of “selfishness”, which was made worse by family and friends not wanting me to leave.

Yet now, four months after I have left, I’ve realised that moving here was definitely the right decision, for both Elliot and I, and our future lives. Sure, I miss the beaches and sunshine, my coffee dates with my friends, popping to the country to visit my parents, and road-tripping around one of the most beautiful countries in the world. But for now, I am content with being where I am, and I know as we build our lives here we will be happy. I am confident I will continue to get sound health care, we both have new and different career opportunities and are settling in well with the help of our fantastic family and new friends.

Next week we have our friend Mel joining us from NZ, a few hospital appointments/scans and a trip to Edinburgh, so stay tuned for my next travel blog.

From one very happy marfling,

Keira xo

 

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