Medical procedures are something I’ve gotten used to over the years. So many professionals have seen my open, bare-naked chest, that I no longer have any issues with undressing for all these “procedures”.

But at 22, I had issues with it!

Before the surgery, I had about 3 echocardiograms (echo or echoes for short), which involve stripping off my top half and having an ultrasound over my heart.

Now my heart is slightly more central than most people’s, and it’s in an awkward place. To see the blood flowing in and out of the heart (which is what an echo does) they would have to put the ultrasound device over my throat to look down onto the heart, or under my rib cage to look up to the heart. As a very skinny young lady, this was not comfortable at all. It hurt, all the prodding and digging, and I’d often end up with bruises from the procedure – mainly because of the frustrations of the doctors and nurses, who were only trying to help, but desperate to see what they were looking for.

My GUCH nurse was there to support me throughout. Explaining what everything was for, holding my hand throughout and being a shoulder to cry on.

Believe me when I say, there were lots of tears.

When the outside doesn’t match the inside

In my head, I was (and still think like this) a perfectly healthy person, who was asthmatic. And as I’d learnt to deal with that, I knew my physical limits (which were non-existent, as I was a young person enjoying life) and was struggling with understanding that my body wasn’t right internally. Externally I showed no symptoms – and how are you supposed to know if your internal organs aren’t working? I had no signs.

The only major clue that something wasn’t right was my oxygen level test – the thing they clip on your finger when taking routine blood pressure. Mine showed up as having 70% oxygen in my blood.

This baffled the doctors, as it was the only sign that something wasn’t right. Due to not being able to get the information they needed from the echoes, they booked me in for an angiogram the day before my surgery and prepared me for recovery from having repair work and a possible valve replacement.

Out of place

My dad had had a valve replacement 2 years before this, so I knew it would mean a lifestyle change. I had group sessions for diet control, exercise, and recovery. But I was the youngest there by at least 30 years. But if they put me in with Congenital Heart patients, I was an adult with toddlers and their parents.

It was an incredibly difficult time, as I felt no-one really knew what was going on with me. We were literally waiting for the surgery to decide.

Making decisions with incomplete information

My angiogram happened the day before the surgery. I had to have a general anaesthetic for this, and now that I was a “heart” patient, it was a big deal. Six months previously, I’d had all my wisdom teeth removed under general, but now it was a completely different experience, with lots of questions asked.

The pre-op nurses asked if I had any tattoos, and then answered for me saying of course I didn’t as I had a congenital heart condition. Well actually, I did! Wasn’t I allowed one? Well, apparently not, if I’d had got blood poisoning I could have died. And the same with piercings. And I should never have gone bungee jumping either!

Looking at it, I shouldn’t have been allowed to do so many things, but I did.

The weekend before the surgery, I went out with friends and got very drunk. One last “bender” before my life changed forever.

My body had other plans

The angiogram was a simple, quick procedure, and if everything was OK, I should have had the surgery the next day. But I’ve learnt that my body does what it wants and isn’t always in sync with plans.

I woke from the general aesthetic with stomach pains – huge ones. I was doubled over with pain. Turns out, probably due to the stress, I was extremely “backed up” and had to take some laxatives, and I also had a kidney infection.

The surgery was delayed for a further two weeks – but at least they now knew what surgery they would be doing!! It was just a repair, I didn’t need a valve, which meant I didn’t need to change my lifestyle too much.

The surgery had been rearranged and my parents took me to the cinema the weekend before rather than allowing me out to party again – after all, that could have been the reason I got a kidney infection!!