My Story - Victoria
I could see it starting. That slightly confused look I’ve seen so often before. The cogs in the brain of the nail technician who I’d found on Treatwell just a day ago to fit me in for a file and polish, were starting to churn beyond her task of taking care of my very sad and neglected cuticles. A sound she must have been familiar with, but not one native to her work place, was beginning to disturb the blanks in the conversation between us. I’ve never been a natural small talker. I’m one of those who if they were brave enough, would ask to sit in those specially designated “quiet” chairs at the hairdressers. Sadly though I opt for the regular chairs and make the poor being colouring my hair work double time trying to squeeze any socially acceptable conversation out of me. Tick, tick, tick. The nail technician glanced up, then looked around. Knowing this was her salon, and she did not have a wall clock, or anything else that might make a bomb like noise, she quickly turned back to me and smiled, saying “gosh your watch is really loud!” I smile back, but only for a second, as I know that’s all I’ll have before she returns to looking at my hands where she’ll then extend her gaze to look at my wrist, and then realise that I am in fact not wearing a watch. I mentally sigh and give the tiniest of eye rolls so she won’t see. Here we go again…so much for a quiet afternoon of pampering and no small talk. “It’s actually my heart”. I try to say it in such a way that makes it sound like nothing important, not a big deal, no need to ask further questions. I wasn’t successful. Her eyebrows raise and I realise I’m now down for the rest of my appointment explaining what has happened in my life to make me now sound like Tick-Tock the crocodile from Peter Pan. I knew when it first happened, getting ill, there would be times in my life where I’d have to explain myself and my health to a stranger. Like when I’d need to explain why I had to do the whole of my last year at university again (no I didn’t fail) or why there would be future gaps on my CV (no I never got sacked for getting drunk at an office party and being inappropriate with the photocopier) I just hadn’t realised at the beginning, in how many different aspects of my life I would end up talking about my health. And so here I am, sat with my nails soaking, telling yet another stranger the story of my 21st birthday.
One Sunday night, my 4 house mates and I went out for dinner to conclude what had been a momentous week of celebrations for mine and my best friend Yasmin’s 21st birthdays. A quieter affair to round off the festivities, we headed to our local gastro pub, to laugh over stories and photos collected that week. As another house mate began sharing a story, I started to feel unwell, like my dress was too tight, and maybe I had just over indulged a little too much that week. I excused myself to head to the ladies room, and upon entering, promptly collapsed against the wall, between the sinks and the hand dryer. I felt as if a cricket bat had just been slammed into my chest with such force that it knocked my eye sight out for a few seconds. As I regained the use of my legs, and hauled my body up from the bathroom floor, my house mate came to check on me, where it was then decided it might be best if I went home. I couldn’t understand what was happening. My chest was hurting, my breathing was laboured, and I had lost the majority of colour in my face. I thought a good night’s sleep would be the best remedy for what I assumed was just a reaction to my week of indulgence. Thankfully, my house mates thought better of it, and insisted I went to the A and E department. Not to be too melodramatic, but had we gone with plan A of me just crawling into bed, it’s a certainty I would not be here now, sharing this story with you.
Having raced through the city of Bristol in my friend Charlotte’s cobalt blue VW Polo (I put my foot down at the suggestion of an ambulance) we arrived at the Bristol Royal Infirmary to find the A and E department still very busy, even for a Sunday night. By this point, all my energy had gone into keeping myself upright, which left nothing more for communicating. Charlotte explained to the staff on reception my symptoms, and we were told to sit and wait till we were called. I could no longer hold myself up, and I lay my head and upper body on the empty plastic chair next to where I was sitting. I tried to focus on keeping my breathing slow and the vomit rising in my throat inside my body. A man who was also waiting, I believe he was homeless, could see the distress I was in, and started to shout out that I needed to be seen right away. He was proclaiming I could have his place in line and that I needed help urgently. This commotion seemed to rouse the interest of two paramedics, who came over and asked what was wrong. I tried to explain how I was feeling, but my breath was short and energy levels so low I could barely lift my head off the seat. They could see me clutching at my chest, still struggling for breathe, and presumably the colour of my skin, but somehow came up with the prognosis that I was having a panic attack. They suggested to Charlotte she take me “outside for a fag, and try to calm down a bit”.
This episode had caught the attention of a passing doctor, who took one look at me before seemingly producing a wheelchair as if from nowhere, and whisking me off to another room. Following an ECG, an echocardiogram, an X-ray and a CT scan, it was discovered that the cricket bat sensation I had felt hours earlier, was actually the root of my aorta ripping or “dissecting”. I had experienced a type A aortic dissection as a result of an undiagnosed congenital genetic mutation known as Marfan syndrome. Marfan syndrome is a disorder of the body's connective tissues, a group of tissues that maintain the structure of the body and support internal organs and other tissues. There was an episode of Scrubs once, where Dr. Cox describes an aortic dissection as a doctor’s worse nightmare- oh good. After more tests, more scans, more conversations with what felt like a gazillion doctors, it was decided I would be having emergency surgery the following morning to repair the dissection, and damage caused to my right coronary artery, with the one small snag being there was a 30% mortality rate. With my parents at home in Birmingham, I had to make a phone call to them I never quite imagined I would have to do. It went along the lines of “Hi, it’s me. I’m ok, but I’m in hospital and about to have a small operation on my heart. Oh, and I might not come through it. Can you come to Bristol please?” By the time my parents arrived, it was getting onto 1 am, with my surgery planned for around 6am. We spent the next few hours navigating my first time experiencing morphine (fantastic highs with very vomit-y lows) and trying to make sense of what was about to happen. Other than asthma as a baby, I had always been healthy and in reasonably good nick. None of us could understand how at 21 years old, I was about to have open heart surgery, and there be a very real possibility that I might not come through it. As 6am approached and my surgery began, a truly marvellous team of extra special doctors and nurses bought me through an 11 hour operation and out the other side. What followed next was a very long and painful recovery at home, and learning to live by a completely different way of life. I had to learn to walk again, as my left leg had been robbed of a vein that was used to by-pass and correct the damage to my coronary artery. I would now be on medication for the rest of my life, including a blood thinner called Warfarin. I was left with a very handsome scar which started at my décolletage, and finished about five inches up from my belly button. And I had now gained my “tick”- a mechanical valve made of titanium placed in my newly repaired aorta which acts like doors, to ensure blood continued to flow around my body. It sounds like and has the rhythm of a heartbeat, only lounder and tinnier. I remember lying in my bed in the ICU, surrounded by noisy machines, but all I could hear was “tick, tick, tick” It was deafening. And on those first few nights, only exhaustion and pain medication got me through. It took a very long time get used to, and still to this day, at night time if I lay in certain positions, the sound can be too loud and I have to move to mute it a little.
Over the next 13 years, I would have 3 more rounds of open heart surgery, each with a recovery harder than the last as my body ages and gets a bit fed up with being poked and prodded. I’ve had my ribs broken so that surgeons could gain access to different parts of my aorta, I’ve been given epidurals because I was told the pain would be unbearable to manage even with the strongest doses of morphine, and I’ve now collected a number of scars on my chest, back, stomach, thighs and legs. I’ve had a silent heart attack, a mini-stroke, an aortic aneurysm and a type B dissection. I’ve had well over a thousand needles pricked into my veins, received countless amounts of donor blood, and before my last two surgeries, been made to sign a form that states I understand there is a chance I might die during my operation, and that I promise not to sue the NHS if that happens. Hmmm, ok. But I’ve also had hundreds of get well cards, and a parade of visitors each time I’ve had to stay in hospital even for just a night. I’ve had gorgeous letters and FaceTimes from my beautiful nieces to cheer me up, care packages from friends far away, and a garden centre’s worth of flowers. I’ve had the most incredible support from my family, some of whom I’ve had to beg to stop making me laugh during my recovery because it hurt too much. I’ve been able to walk down the aisle with my best friend at her wedding, five weeks after my last surgery because I had the help of so many to get me well enough to be there. And I’ve also found the most amazing husband, who has happily slept on the floor in our room to ensure I was comfortable, but could still be there in the middle of the night to help get me to the bathroom. I’ve had many kind people tell me that I’m brave, and to be completely honest with you, that’s a word I’m just not comfortable with being used to describe me. I am beyond lucky and grateful to have the life that I do. So many go through far worse. Children who spend months, years even, waiting in hospitals for an organ transplant because donor levels are still not high enough. People who lose their fight with an illness because the research just hasn’t quite got there yet. I am grateful, because the research had been done that meant my life has been saved four times over. I am grateful because many individuals have taken the time, and donated blood which has kept me alive during operations. I am grateful, because I’ve now been lead to a career as a professional fundraiser, and I get to meet people every day who benefit from the generosity of others.
As a family, we have been fundraising for the British Heart Foundation ever since 2007. We have taken part in runs, mountain climbs in the UK and Peru, held fancy dress parties, pub quizzes, scavenger hunts, and my sister in-law, whose blog you are reading, also generously donated profits from the sale of goods from her first business. I’ve watched so many friends and family take on challenges to raise money for the BHF, so in September 2018, I convinced a team of 10 friends and family to join me on a 50km non-stop trek in the Peak District. After 15 hours, and 1,613 meters of ascent (that’s 300 meters more than climbing the highest mountain in the UK!) the pain of blisters, knees, hips and backs stayed with us for weeks after. Aside from surgery, it was easily the hardest physical thing I have ever endured. Prior to this challenge, my cardio pretty much consisted of walking up and down the wine aisle of Sainsbury’s, so anyone really can take on a fundraising challenge if they want to. And if you need more convincing, eight months after the trek, I found out I actually had an aortic aneurysm which had likely been there for the better part of 18 months. Thank goodness I didn’t get caught out in the middle of nowhere with the aneurysm rupturing, and have to get an air ambulance out of there! I would have never have heard the end of it from my husband if I didn’t finish the trek! All together, we estimate we have raised close to £37,000 and we’ve had so much fun along the way. I had my last surgery, almost a year ago, where pretty much my entire descending aorta was replaced with an artificial one. This should mean I won’t need any more open heart surgery again, and any further intervention can be done through keyhole with much less risk involved, and much quicker healing. The future for me and my little family (my husband, Greg and our dog, Darren) looks really exciting from here on in. I’m looking forward to being able to get back to some sense of normality (post COVID of course!) and living my life, safe in the knowledge I won’t be heading under the knife any time soon.
There are some remarkable organisations out there, doing remarkable things, and during such uncertain times as these, they need support and generosity move than ever. Action Medical Research for children, who are dedicated to funding research into finding cures and treatments for the rarest infant and childhood diseases. They also currently have a special research project which is looking into how to prevent premature birth, and all the nasty, sometimes life altering side effects of it. The British Heart Foundation who are the largest funder of heart health research in Europe, along with many other vascular conditions, including stroke. Also, if you have any questions or want to know more about either organ or blood donation, please do visit their respective sites, and read some of the wonderful stories of how important and life changing these special gifts of donations are:
