8: In The Blood

New Technology, Unfamiliar Faces, Night Shivers
and The Weight of Lockdown.

Having gone through all the stress of waiting for open heart surgery, the trauma involved in the procedure and finally the pains and worries of recovery, the last thing anyone would want to hear is that the surgery wasn’t as successful as first thought and that corrective work was required.
This was however, the unfortunate reality to which I had to look forward.

The Techno Beat

Let us for a moment, travel back many months before this, to the few weeks leading up to my surgery.
I had gone to the hospital for a consultation with one of the surgeons who would be performing the procedure to discuss what they were planning to do.

During my procedure as an infant I was, amongst other corrections, implanted with a human donor section of an artery including the valve, called a homograft.
At age 15, I had finally outgrown my baby valve and required a replacement.
However, instead of a donor item as previously, I was told that they were going with a new kind of device, an artificial one which, when the need for next valve came along, would allow the surgery to be completed using much less invasive keyhole techniques

New technology is always exciting but, in as much as allowing me to blag people that I was a cyborg sounded cool, it’s was also something to approach with caution.
We spent a long time questioning the reasoning behind making this change, after all the homograft had been working very well, so why rock the boat now?

It was explained to us that not having to open up my chest would mean many of the risks involved in such major surgery could be avoided. Which I have to say sounded like a good thing, giving that at that point I still had an intense fear of sneezing.

So off we went on our way home until just a few weeks later I was back for the big opening.

Remain Sealed

The prospect of yet more surgery, didn’t exactly leave me skipping down the halls with joy (although in hindsight, given the outcome, I maybe should have jumped at the opportunity). I had made it through those long months of recovery and although my health could have been better, I had been praying that they would tell me it was just some kind of winter bug.

Amidst this heart breaking revelation the doctors were able to give me some relatively positive news. The issue they were seeing wasn’t with the device they had implanted directly, rather it was a narrowing around the valve within.
This could be fixed by inserting a new valve by wire inside the old one, which would then open up and essentially squash the old one against the walls of the device.

It looked like this new fancy technology was going to show it’s usefulness sooner than we had all expected, with a plan being made for them to insert the new valve through keyhole surgery, avoiding as mentioned earlier, open surgery, with its attendant higher risks,

I was told however that this procedure would not be carried out at York Hill Children’s Hospital, as previously.
It would be performed at The Golden Jubilee, an adult hospital.

You’re A Big Boy Now

You may be reading this and thinking, “come on man, you were sixteen, of course you’re not going to a children’s hospital anymore”.

The problem was this, for sixteen years I had been being dealt with by the same people. I knew most of my doctors and nurses very well and if there was ever a new member of staff it always seemed like they had been told about me before I met them.
I don’t just mean told about my medical history but about who I was, what I was like. My consultant was a very funny man who while always being professional, was never one to avoid a joke and a bit of sarcasm should the opportunity arise.

Knowing that I would be seeing friendly faces helped to alleviate the fear that could arise whenever I was going for a hospital visit.

When I was told that it was time for me to transition to adult services, I felt like all that would go away. Instead of nurses being friendly and sympathetic, they would be cold and uncaring.
After any of my procedures my parents had always been sat by my bedside all through the recovery, I had never been left alone but now were they going to be told they could only see me during visitor hours.
I avoided imagining what might result with anyone who tried that with my mum and dad, as the end result doesn’t bear thinking about.

In the end, transitioning was nothing like the horror show I had formed in my own head. That’s not to say that at twenty five I don’t still miss being given sweets whenever I get my blood taken.

Nine To Twelve Pints

On the subject of blood, I just want to say that it’s a truly wonderful substance. Without it, not one single part of our bodies would be able to function.
It’s also a great marker for when something is wrong inside, hence the first thing any hospital wants to do when performing tests is take some blood samples.

So, after the decision of what was to be done had been made I went home and waited for my procedure. The symptoms I already had didn’t really get any worse in the time but I did start to develop all new ones.
My temperature would be all over the place, one minute I was shivering and wrapping myself up in every blanket I could find, the next I wanted to stand under a cold shower as I started to burn up.
At night I wanted to wrap the blankets tightly but then I would end up being soaked in sweat.

I didn’t want to eat anything either, it was like my stomach had shrunken to the size of a golf ball and I felt full after just one bite of dinner most nights.

Of course, given what we had just been told it seemed the obvious reason for all these issues was the problem with my heart. Even our GP confirmed that this was the issue and I just needed to wait for the procedure to fix it.

Finally the day came for my surgery and I was amazed by how much I was looking forward to having it done. It would mean that all these awful symptoms would stop and I would feel like a human being again. I went in the day before and they did all the regular pre-op checks on me, including taking my blood.

The evening before my surgery we received a telephone call from one of my new consultants. The blood tests had thrown up something they found more than a little concerning…

Lockdown VS My Waistline

I can just picture all the self help books that are going to be published when this is over with a title along the lines of what I’ve written above so just remember, you read it here first.

I’m sure I am not the only one who has found themselves gaining a pound or two during these past few months. With things like gyms being shut, some of them near where I live have even closed entirely now, keeping up fitness has become a real challenge for many of us.

I’m saying that as if I can use it as an excuse when in actual fact, I have all the equipment at home.

Getting all artistic with the weights.

I have still been lifting weights with my dad but with the lack of any kind of routine we can sometimes go a whole week without even looking at them.
Snacking on food also seems to have become so much easier these days. I think I’ve eaten my own weight in cheese puffs in the last few weeks alone.

There is no doubt that having one leg can make it harder to keep the weight off. I had a new socket made for my leg just before lockdown. It’s been causing some pain and sores on the distal end of my residual but I haven’t been able to attend hospital as yet to have it adjusted.
This means that I haven’t been moving around nearly as much as I usually do. My shoulders, wrists and forearms are doing great from all the crutch work but it has limited the exercise I can do.

So, this week we have decided that we are gonna put a real effort in to sticking to some kind of exercise routine and watching what we eat.

I feel very motivated as I write this while chomping down on a bag of cheese and onion crisps.

Invisabel

A friend of mine has recently started up a blog to help raise awareness of invisible illnesses.

She has been reaching out to people who live with such issues to give them the opportunity and platform to share a bit about themselves and their health conditions.
I thoroughly recommend checking her blog out and keeping up with it as it continues to fill up with interesting and illuminating stories.

Also, for any of you reading this who have a health condition and would be happy to share you story then there is an option on her site to get in touch.
I will put a link to her blog below.

The Last Bit

Well, there goes another chapter in the story of how I went from heart surgery to leg loss. I hope you’ve enjoyed reading this one and are finding it interesting. Sorry about the cliff hangers but it’s too hard to resist when they just seem to fit so organically.

I would love to hear what you think about this post in the comments below and if you enjoyed, why not give me an email follow. It’s the quickest way to get notifications about any new posts.

Thank you for reading and remember, as a wise man once said… be excellent to each other.

The Wisdom

  • Try not to be scared of new faces.
    I haven’t delved particularly deeply into my experience with adult services in this post but I did mention that it wasn’t nearly as bad as I expected. The staff that initially dealt with me, especially the nurses, all knew I was just coming over from paediatrics and did their best to ease me in.
    This is not just limited to a hospital experience though. A change of workplace, a new school, team, theatre troupe. These can all be difficult situations to deal with and it’s true that sometimes people will be unpleasant. I’m not saying that every nurse who’s ever dealt with me since transitioning has been friendly.
    I am saying that it’s always better to greet these new faces with a smile and an open attitude, otherwise you might end up being the unpleasant new face they have to deal with.
  • Force yourself into a routine.
    I know the word force sounds brutal but the truth is, with what’s going on, the lack of something like work to keep the day organised will really throw so many people off kilter with whatever else they plan to do.
    The first reaction when knowing you have a lot of free time is, “oh yeah I’m gonna get so much done and be really productive” but without anything like a job to make you keep a routine it becomes very difficult to stick to one.
  • It’s a scientific fact that if you subscribe to a blog by email then you’re at least 70% cooler than the rest of the population.
    Sign up box is below.

Obligatory Blog Quote

When quoting another’s work to improve your own, the least you can do is give them credit for their own words.

Unknown.

Make sure to check out Invisabel at – http://www.invisabel.com

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