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Bartley's fundraiser for Cardiac Risk in the Young

Bartley Albone is raising money for Cardiac Risk in the Young
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Cardiac Risk in the Young Verified by JustGiving
RCN 1050845 (England & Wales), SC052581 (Scotland)
Each week at least twelve young people in the UK die suddenly as a result of undiagnosed heart conditions. At Cardiac Risk In the Young we aim to save young lives & to help those affected by young sudden cardiac death (YSCD). We do this by providing support, information & screening those affected.

Story

I was leaving my friends house at 3am on the first of January 2024 following an evening working as a freelance chef, new years eve at a restaurant in Charlbury, Oxfordshire when I felt what I first interpreted as a hammer blow against my chest. I fell to one knee, and looked around, trying to guage where the attack may have come from. As i started to stand back up, I realised that the chances this was a mugging in this idyllic cotswolds village were fairly low and that whatever was happening to me was internal.

Having had a few drinks I decided that my best course of action was to get home and jump in a cold shower before assessing the state I was in, so i put my arms above my head and walked the 5 minute journey between my apartment and my friends house, all the while feeling a tearing pain descend into my stomach and an excruciating ache rise into my jaw.

I got back to my apartment, I jumped in the shower and as I got out to get dressed I realised as I struggled to put my belt on that my left arm wasn't working.

With this, I called an ambulance, the line disconnected and I managed to call another, i then realised that as my flat was behind a deli and through an alleyway and that the ambulance was unlikely to find me should I collapse, so I waited for it in the street.

When the ambulance arrived I was ECG'd and informed that I was well within normal range, and that should I wish to go back to bed that I may. However that the local hospital had far superior facilities, my arm had returned to normal and I was relatively copus mentus so I was in two minds. However I was convinced that I should get a more thorough examination.

At 9pm Jaunary the first I was discharged and told to come back at 8am January 2nd to get a blood test and a colchicine prescription. I missed this appointment due to feeling too unwell to get out of bed - on January the 3rd I was called by the hospital and encouraged to either make my way in, or to allow them to take me off their books. I informed them that I would make my way in but that I had been too unwell in the days prior. After another day and night in bed on the the 4th of January I walked to the local co-op, picked up some lucosade sport, and drove the roughly half hour drive from Charlbury to the John Radcliffe Hospital, Oxford - I found parking at the rear of the hospital, bought 4 hours of parking and proceeded into the cardiac wards waiting room. By the time I saw a consultant my parking meter was about to run out, so after he pointed out that my neck was pulsing oddly and that he would like to schedule me an echocardiogram I rushed to go and put more time on my car.

Upon my return from the carpark I was taken into another room and I met the Doctor whom's care I am still under - who informed me that he was about to perform an ultrasound upon my chest. Once the gel was applied he began to touch the sensor to my chest and before pressure had really been applied monitors swung round and the energy of the room palpably changed from compassionate calm to something clearly a little bit more serious.

Following some very comprehensive CT and MRI scans I was diagnosed with Aortic Dissection, long term regurgitation of my aortic valve, resulting in a heart that was extremely enlarged and a suspected connective tissue disorder.

It turns out that 40% of my entire blood network had dissected - Including my entire aorta and carotid arteries, which required emergency surgical intervention. My surgeon - senior lecturer in cardiology at Oxford University with a specific interest in complex Aortal surgery was probably the best possible surgeon available on the NHS and had been due to go on holiday once he had finished in theatre - He cancelled that holiday in front of me, asked if I had preference between an organic or mechanical valve and explained that there was a good chance I wouldnt make it through surgery and that even if I did, I may not be able to walk or talk again, and that this was probably the right time to ring my loved ones. I was put into triage while preparations could be made and went through for surgery at around 8am January 5th 2024. I woke up on January 6th following 12 hours of surgery which had included 7 minutes of full circulatory arrest - to my surgeon and parents asking me if I could move my feet or let them know if i felt any pain. It was my 29th birthday.

I went around 90 hours undiagnosed with one of the most clinically significant aortopathies my clinical team have ever seen and over 100 hours between dissection and interventional surgery. Had I opened a door with my left arm when I went to go and put more time on my car I would almost certainly have ruptured. It was not unlikely that I would not survive surgery, and many of my specialists have articulated that the details of my circumstance are nothing short of a miracle - Apparently just finding parking at Oxford University Hospitals can be considered as such, even without the extensive damage to my blood network.

This page is one of three I'm setting up - one to raise money for Oxford University Hospitals Research and Development charity

Another to raise awareness for Aortic dissection

and another for Cardiac Risk in the young

Moving on from this I would like to see echocardiogram being put forward as a first line screening to anyone who presents at A&E with unexplained chest pains, palpitations or other cardiac symptoms. Particularly if symptoms are not easily explained by ECG - as we know my arterial network has been aneurysed and my valve regurgitating for some time and as I had presented at A&E a few times over the years with such symptoms - including my initial discharge on January the first - all it would have taken would have been some preliminary imaging for me to have not had to get quite as lucky as I got. I hope nobody else ever needs to get that lucky again.

Donation summary

Total
£250.00
+ £62.50 Gift Aid
Online
£250.00
Offline
£0.00

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