So, I Need Heart Surgery

This February it's Marfan Syndrome Awareness Month, an opportunity to shout extra loud about the rare genetic condition I live with. These days I don't share the details of my health and disability as much as I used to, but when big life events happen my instinct after 9 years of blogging is still to write about it. So, when I found out on New Year's Eve that major open heart surgery is on the cards for me this year, I knew that when February came around I wanted to talk about this next step in my journey. 

Two hands are making a heart in the sky up against a sunset.

There's a whole information page about Marfan Syndrome here on my blog so I won't give you the full explanation but essentially Marfan is a genetic connective tissue disorder. Connective tissue is almost like the glue that holds your body together, and it's found everywhere, meaning this syndrome can affect everything from your eyes to your bones and, your heart. Up until recently my manifestation of it has been mostly spinal and skeletal. I documented my spinal fusion surgery on here and I've also had a total hip replacement. Currently I'm a powerchair user thanks to a lovely little spinal cyst being a pain, but for the last few years I've been pretty stable. I've finally had a break from the constant scans and investigations, for the most part I've not got any worse or any better, meaning I've been able to adjust to my current normal. I knew that at some point my heart would join in with the party, but I didn't expect that development to happen at 23 years old.

Marfan Syndrome can cause a few different heart problems, one of which are aortic aneurysms. The connective tissues are weak in people with Marfan and this allows the aorta, the main artery pumping blood to the rest of your body, to stretch and bulge. If an aneurysm was left on it's own with no interventions then it's likely at some point it would burst, this is an aortic dissection. My grandad and uncle who both had the condition passed away from this complication. Times have moved on since then though and these days it doesn't need to be a life threatening event, we can operate before things are allowed to reach that point. It's different for every person and their circumstances but for me, my cardiologist has always said that we'd operate when my aorta reached 4.5cm, and my last MRI scan showed that I have now reached that number. 

As I say, I've always known heart surgery was an eventuality for me, but my aortic measurements have been stable for years and so I believed I could get away without surgery until my 30s, or maybe even my 40s. In my mind though, it's better to get it over and done with. My physical health is the best it's ever going to be right now, delaying by years will mean recovery would be harder and longer. The surgery itself is an aortic root replacement, this is where they will replace the bulging part of the aorta with a synthetic tube. I can add that to the list of foreign bodies littered around my body then! It's major open heart surgery, and to most it probably sounds terrifying. But, I've had my whole life to get used to the idea of having this operation, and I now have 3 major surgeries under my belt. That's a lot of wisdom to get me through! 

A graphic with a white background. In the top right hand corner over a read background text reads 'did you know'. Text on the rest of the graphic reads '1 in 5,000 people are affected by Marfan worldwide. It affects people equally regardless of race, ethnicity, and gender. The marfan foundation. Learn more at marfan.org #MarfanAwareness

Covid-19 of course changes the situation though, and right now most of my worries are around that. As of right now elective surgeries are still suspended at my hospital in London, and even once they begin there is a backlog to get through. So, I could potentially be waiting 6 months for my operation. On one hand that could mean the landscape looks different by then and potentially I could have visitors to the hospital, but on the other hand it's anxiety inducing being told you need heart surgery but you'll need to wait half a year to have it. It's really not how I imagined this journey would go when the time to operate came about. 

I feel more prepared than most to tackle this next step in my Marfan experience though, my Mum has been open and honest with me from day 1 and I've spent years educating myself, so when my cardiologist started talking about the surgery itself, I already knew what she was talking about and that makes a big difference. Like my previous surgeries, I've already watched it on YouTube/TV, because for me the more I know, the more confident I feel. It's definitely not something most people would do, I can see why it would scare someone, but throughout my whole life I've found that being informed has helped me to deal with everything that's been thrown my way. 

Naturally, when the time comes I'm going to document as much of it as possible on here, because even now I still receive emails and messages from people thanking me for sharing my spinal fusion experience so honestly. My blog has always been about educating people and showing them they are not alone and I really want to continue that. It also stands as an important reminder to me of how resilient I am and that's exactly the kind of reminder I often need. Speaking of my spinal fusion, I'm weirdly excited that I'm now going to have symmetrical scars. A long one down the centre of my back and a long one down the centre of my chest, how cool?

You can learn more about Marfan Syndrome on the NHS website and via The Marfan Foundation.

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