This post is completely different from my usual posts, as autism is not the sole focus of what I want to write about. Instead I want to dedicate a post to congenital heart defect (CHD) awareness week. I’m dedicating my post specifically to a condition called Wolff Parkinson White syndrome, a condition that it somewhat rare and so many people have likely never heard of it. In Wolff Parkinson White individuals are born with an accessory electrical pathway in their heart (sometimes even multiple accessory pathways). Although the condition can lay dormant, or be active with little consequence it can result in additional arrhythmias that can be terrifying or even dangerous in some cases. I want to raise awareness by sharing my story of having Wolff Parkinson White, and all the fears and experiences that came along side it.
Since birth my heart rate had always been normal, my heart had never caused me any trouble, pain or weird sensations. An experience that has stuck with me due to the irony is being in my teenage years and reading a magazine that explained the struggles a celebrity was having with a heart condition and feeling overwhelmingly thankful that I’d been born with a healthy heart. The irony comes in because the condition the celebrity was struggling with was in fact Wolff Parkinson White, but at the time that name meant nothing to me, I knew nothing about the syndrome and I didn’t ever imagine I would need to.
For me, 2012 was an incredibly difficult year, it was the year I was told I has high functioning autism and I went through a horrible event in my personal life that left me feeling extremely sad and lonely. While all of them things were going on around me I sat one day in my room after therapy and felt a surge of emotion (my emotions often take me by surprise because I don’t always understand them) which was followed by a shaking sensation inside my chest. The only way I can describe the sensation is that it felt like my heart had just painfully vibrated (what turned out to later be an ectopic beat). I was absolutely petrified, it took a very long time for me to calm down that day but I eventually put it down to being a palpitation from all the stress I was under. A couple of weeks went by and every time I felt emotion, whether it be sadness, stress or even laughing too much my heart would vibrate and leave me terrified.
Giving that the sensation wasn’t going away I went to my GP who told me my heart rate was too fast for my age and referred me for a resting ECG. All of the health problems I’d had before this had solutions to cure or control them, so the thought of having a heart problem terrified me and I’d already started to think up every possible worst case scenario that it could be. It took a while for the ECG referral to come through, so in the run up I found myself back at the GP a fair few times. I couldn’t sleep from a mixture of a fast heart rate and fear of what was going on, my heart would every now and then beat so fast while I was sat down it felt like I was running and that would last for hours on end. My Dr offered me beta blockers, but luckily I refused, I’d not long learnt about beta blockers on one of my A level courses and knew the nasty side effects it would bring, the Dr insisted I took the prescription but I never took the medication I wanted to wait for a definitive answer before treating an unknown condition.
When my ECG eventually came back I got a call from my Dr telling me something was wrong with my results and that I’d been referred on to a specialist GP in cardiology as a result. When I went in to see the Dr for more details they told me I had Wolff Parkinson White (WPW), the specific Dr I saw had dealt with cases of WPW in the past, all of which were apparently dormant pathways, so I was treated as though mine would also be dormant. The Dr reassured me I was safe and that the pathway wasn’t active, that my symptoms were just due to anxiety and that I should reconsider taking the beta blockers (I didn’t, I still didn’t trust the advice). I wasn’t happy with what I’d been told, so I read up on WPW myself, and found that for people like me with prominent symptoms there was a risk and that an operation should be considered to correct the issue.
When I saw the specialist GP the exact same information was reiterated to me, that I was anxious and therefore causing my own symptoms and that everything was going to be fine. After taking home a monitor for a few days that shown no results this confirmed the Drs opinions that it was just anxiety. But I wasn’t convinced, the problem for me was that the symptoms weren’t always present they were sporadic, I could suffer for a month and then be ok for weeks, it was unpredictable and it was unfortunate that during the time I’d had the monitor nothing had happened. My psychiatrist at the time had diagnosed me, without conferring with me, as having generalised anxiety disorder. I agreed with the observation but I feel like it got in the way at this point in my life, I needed people to believe my symptoms were not anxiety, I don’t doubt that my anxiety didn’t help matters but I knew it wasn’t the cause. My psychiatrist suggested medication for my anxiety, I wasn’t happy but therapy wasn’t working at all and they were trying to reduce my heart problems in the best way they thought they could. I told my psychiatrist I didn’t like the thought of taking medication with a heart condition, so she requested permission from the specialist GP who confirmed it was safe. I ignored their permission and refused to take medication, my anxiety wasn’t fun it never has been but I still wouldn’t consider medication because I personally don’t wish to be on it. This led to me later being discharged from mental health services despite how bad my mental state was and how much I needed the support.
After that things got worse, I was waking up in the night feeling dizzy with a pounding heart rate, at one point I felt like I’d lost consciousness briefly after my heart had been racing, but it was impossible for me to know because I’d been on my own. I wasn’t sleeping much at all because I was terrified of what would happen, if I’d ever wake up again or if I’d wake up with a fast heart rate feeling unwell. I became depressed, I was dealing with difficult things in my personal life and increasingly felt like I had no consistency, everything was either changing or unreliable and my meltdowns were becoming more and more frequent. Eventually, I felt physically sick, the lack of sleep was making me feel constantly drained and I was too scared to do anything. My heart had once again started to race and so I took myself to a walk in centre, when they saw how high my heart rate was they done an ECG and sent me to hospital. The hospital confirmed my heart condition was stable but that I needed some sort of intervention, so they gave me medication (to this day I have no idea what medication, I was too tired to ask questions) to bring my heart rate down and they kept me in over night to see a cardiologist the following day.
The next day I saw a cardiologist and for the first time in months a Dr listened to me and didn’t blame my anxiety, instead he took on board everything I said and told me there may be a slight risk of sudden cardiac death and so wanted to arrange a corrective operation. Although I am still extremely thankful this Dr listened, which led to me eventually getting the treatment I needed, I didn’t cope well with the news and had a meltdown for around an hour at the thought of sudden cardiac death. Although from an autistic perspective the hospital stay wasn’t easy, it was the best thing that could have happened in regards to my heart health. I stayed only a couple of nights before I was discharged, and was then transferred from the specialist GP to the hospital Dr who had seen me.
The hospital Dr arranged for a 7 day monitor in the hope that the extra time might allow them to catch the problem. Thankfully, it did, I was fighting off a virus and was under a lot of stress whilst on the monitor, which triggered the problem meaning it was finally caught on an ECG. I was called back and told that I’d had a secondary arrhythmia due to the WPW and that if it had lasted too much longer it could have been fatal, so they referred me to Liverpool heart and chest for a cardiac ablation to fix my WPW. Although the news was terrifying, after the meltdown that followed I felt more relaxed than I had since the whole thing had started, I was finally being listened to I had known from the beginning it wasn’t just anxiety and I was going to be given a solution. Due to other commitments of mine the operation wasn’t for quite a while later but the time in-between felt much easier to deal with.
I can’t stress enough how fantastic Liverpool heart and chest were, I am extremely grateful to them for everything they done for me. A cardiac catheter ablation is usually done under local anaesthetic, but after the specialist met with me and we discussed my high functioning autism he offered for me to have the operation under general anaesthetic. He felt it would be too anxiety inducing for me otherwise and feared they may not get to the end of the surgery before it would become too much for me meaning they’d have to stop. After a lot of anxiety about having the anaesthetic I agreed to go under general, and it turned out to be an extremely wise choice on the surgeons part, because as soon as I sat down in the theatre I sat up about to go in to meltdown and voiced that I was far too terrified to proceed. I hadn’t been expecting such a huge operating theatre, in my head I’d pictured going under anaesthetic in a separate room and then being wheeled in to theatre. Instead I was walked in to theatre and lay down, where I would then receive the anaesthetic. It was very overwhelming and there were more people than I’d expected, I’d never seen an operating theatre before and it looked like it belonged in the starship enterprise, I was far too overwhelmed to have been awake during the operation. However, I had too brilliant nurses who calmed me down in seconds, they talked me through everything, kept me from going in to meltdown or from trying to leave at the last second and kept me happy and calm as I went under, they even came to check on me afterwards to make sure it hadn’t been too stressful.
My operation was a success, I was told that I should deem myself as cured from WPW, I was told that further extra pathways could exist and one day activate but that they had checked at that point in time for the presence of any and found that at that time no more existed. My heart health didn’t return to what it once was, I still get fast heart rhythms every now and then and I still experience ectopic beats, but I’m definitely in a much better way than I was. I can walk down the road again without feeling like I’ve just ran a marathon an needing to sit down. Although I still get the odd heart issue I have learned which triggers to avoid (anxiety/alcohol/certain medications), which to only have or do in moderation (tea/exercises beyond walking) and what things will boost my heart health (plenty of water and rest) and continue to have ECG tests whenever new symptoms occur.
Not everyone will experience WPW as I did, some people have the pathway remain dormant and get to carry on their lives using a watch and wait technique, others are in a much worse position and either can’t have the ablation or have a failed one and/or are constantly in and out of hospital with the condition. Everybody with WPW is born with the condition, the pathway may never activate or it may activate in childhood or at a later point in life. That was the most difficult part, accepting that in all the years I’d felt lucky and healthy I had in fact had something wrong with my heart, I’d always assumed that anyone with a CHD knew from birth but I was wrong. While heart symptoms can be caused or worsened by stress and anxiety it’s worth having new symptoms checked out professionally, and to an extent trust your instinct. I later was told that if I’d have taken the beta blockers it would have encouraged the use of my accessory pathway (as well as being risky for my asthma), and potentially made matters a lot worse, so I am thankful that I trusted my intuition about not taking medication until I had definite answers. And lastly I’d like to thank Liverpool heart and chest, not only for fixing my problem but for making the day a relaxing experience and helping me whenever my anxiety or autism got in the way. I really cannot stress enough how knowledgable and professional all the staff were, the day would have been a disaster without their support.