3652 days of my life has been consisted of a constant battle with my heart, 54 hours in total of surgery for 6 operations which have not been successful but more helpful towards what is actually wrong with my heart, and a hell load of physical and mental recovery from it.
I was diagnosed at age 8 with Wolff Parkinson White Syndrome, which is a functional defect of the heart, not only was i diagnosed with this but three operations into it, atrial-ventricular tachycardia and supra-ventricular tachycardia soon established after my heart getting a beating from key-hole surgery catheter ablation. Not ONLY was i diagnosed with all of this, what started off as mum telling me to stop running about on the playground, to going to the doctors with an ear infection started off my life as a patient of Bristol Children's Hospital.
It has been an adventure, when i was a child i was so excited about all the different things that was going on during my stay at the hospital, patients who have been to BCH will agree with me that it is brilliant for the short adventurous minds of children, the colours and staff both having a great effect on us. Although by the age of 12, i started to understand more about what was going on, and how serious it could get after a few battles at surgery, i had to grow up very quickly for a 12 year old, and even though i knew i had it i still thought i could do all of the stuff a normal kid could.
If anyone from tewkesbury school can remember, i was chasing a friend of mine Jack Tharme around the playing field as he had my shoe, a normal thing for a normal kid to do as i wasnt such a girly girl but one of the lads i suppose. Although i seemed fine running after him and trying to catch up with him (baring in mind he was extremely fast), my heart gave up on me, i fainted in the middle of the field and i couldn't remember what happened from then, only that Mr McLemmon was wheeling me in a wheelchair through to reception where i found my mum and two brothers panicking, i seemed fine after that but it was the fact that my heart problem could effect me at any point, and when i fainted on that playing field i knew that my life had changed forever.
From then i started to learn about the stuff i could and couldn't do, the running about and playing sports i had to stop, and the doctors told me when i got older (my age now) i couldn't get a tattoo as it could be dangerous, or i couldn't drink or go on roller coasters, nevertheless i still did those things, apart from the tattoo im still waiting on that one, but i did. I challenged my heart on how far it could go, and yes it got me into trouble a lot of the time, but for a patient of a serious heart condition i think ive lived my life quite well so far.
When i was older, about 15 or so i started to search up my condition (dont lie people everyone does it even if they have a minor cough), i started to discover that many football players who die in the middle of the field had WPWS, but they never had the symptoms of it. Im a rare case in that i have always had the symptoms, and my symptoms have gotten worse over the years, but when i discovered about the footballers i felt really scared about what could happen to me if i wasnt careful. I also discovered that celebrities like Jessie J, Meatloaf and Marilyn Manson all have WPW so i didn't feel as bad then, apart from i have additional things ontop of it.
Youre probably wondering 'meg you haven't wrong in ages, why are you writing about this now?' The reason i started this blog was for me to vent, or take myself out of a different world to get away from my operation and problem, a year ago today i went into the operation theater for my sixth operation in which i thought would work, only to be woken up by shock and bed sores and to be told that it was unsuccessful again.
Now once i was older, at about 16 i started to get angry at the doctors, as every patient does. But when i woke up after this operation at 17 years old i told my doctor 'I FUCKING TOLD YOU SO, YOU SHOULD HAVE GIVEN ME A PACEMAKER'. Now by doing this it wasnt a great idea, but he completely understood and thats what i love about the two doctors ive had at BCH. When i went for my follow up appointment, to be told that i have to have another operation this year, i got very upset, and i never get upset about this, im usually quite strong minded and okay about it but i did, i cried my heart out. Because im fed up of being told continuously that my heart hasnt been fixed, and to live day in and out with a worry of 'am i going to drop dead?' 'is this going to damage my heart?'
Eventually my doctor said to me that there is another operation in which they want to try, its an 80% change of a pacemaker, so it will more than likely be that id get one, but it is the same as what they do on kidney stones, the radio frequency, only they are doing it on my AV node. Now the only positive thing about having 6 operations and none being successful is that they all helped to pinpoint the main problem in which my extra pathways were being made, my AV node. The AV node is the main point in your heart where all your beats come and go and the electrical pathways have to start from there and end there (in a way). My problem pinpointed down to the AV node, although this is extremely dangerous and difficult to get to and fix, they came up with a way that even if it does work it may shock the AV node back to normal, but it has more of a chance of damaging it.
My operation is either end of august, beginning of september, i dont know the actual date yet as i have to go for a 'pep' talk my mum calls it with my Doc, although i feel fine about it i still have some questions, but he said finally after 10 years and 6 operations, that this may, and will be the final operation whether it fixes the Radio-frequency way, or the pacemaker way.
In conclusion, id like to say ive never taken my life for granted, when i was a kid and was at tewkesbury school i was a dickhead at times, i was an asshole and a bitch and whatever else they could call me, my operations have damaged my grades, even though i tried as hard as i could, im still doing GCSE math now. I could have done so much better in school if it wasnt for it, but i dont think of the what ifs, and the what could have happeneds anymore. As an 18 year old adult, i like to think of every day in my life a gift, because if it wasnt for the doctors, the meds, and my mum i wouldn't be the person i am today. I am very thankful for what ive had in life, whether ive had friends that don't talk to me anymore, or friends that ive fallen out with, i still appreciate all the memories and stuff that happened, yeah i wish that some of us could have parted ways a bit easier, or could have atleast told me what i did wrong for me to not be their friends anymore but it doesnt matter, you win some you loose some.
I just want to be able to share my story, and to be thankful for what has come upon me even though its been a difficult ride. There are way worse people out there, alot which i have so much respect for and wish i could see alot more, like my friend Antonia, Antonia is probably the driving point for me wanting to fight these diseases and still be able to be happy, shes the strongest woman i know, and i love her alot. But i just want to give attention about the things that make both me and antonia appreciate the little things in life.
Thanks for reading.
MK x
