If you’ve read some of my previous posts on this subject, you’ll know that in August 2019 I had a cardiac arrest, with my heart stopping beating for 40 minutes.
The only reason I survived this ordeal was due to the quick reaction of my Mum and Dad who were in the room (if they had not been, I’d be gone)and the response team in the ambulance that came quickly.
Unfortunately, once recovered enough to go home to the south of England, then my subsequent return to my partner, J, in Wales, meant moving all of my details around the UK with it from the original ICU in Lincoln, then the heart department in Nottingham, through to Eastbourne and lastly, Liverpool Heart and Chest Hospital. This took a while to complete, then coronavirus hit.
Everything was delayed.
As a lower-risk patient, due to having an S-ICD (defibrillator, a bit like a pacemaker in me) surgically ‘installed’, I was immediately lower in the list to be seen by the LHCH, having only letters exchanged between us. However, a whole year later in September 2020, I had several appointments in one day, an ECG, an extended ECG, an Echocardiogram and finally a chat with my cardiologist.
Finally, I have a diagnosis! Finally, I can Google it and join others in my prognosis for the future, I thought. Uh, not exactly.
“Very rare”, were the cardiologists exact words. It’s called Focal Ventricular Fibrillation, or Focal VF for short.
Google it, and you only find scientific journals about it, so it’s easier to search for VF alone and just know that my version is due to the electrical signals sent out by the Foci or the Sinus Node. I basically have one who isn’t a team player and is signalling outside of the normal beat process, which can sometimes knock my whole heart out of rhythm. Hence, the fibrillation.
I’ve been told there’s only five others in the entire LHCH, a huge and specifically Heart-focused hospital that have this. It is very rare, but he can rule out every physical problem with my heart so it has to be electrical. I’m still waiting for my confirmation letter.
As annoyed as I am (and impressed) that I am so rare and special, there’s good news. I can do as much fitness as I want and can take, with no bad effects, can get pregnant and carry happily on my heart medication beta-blocker as I have to stay on it, it is not genetic so I will not pass it on, nor will my family have to go through the process of checking their health and the health of their children. This is fabulous news!
I do not qualify for disabled help as my condition does not impair me in life, only if it happens again and my defibrillator zaps me, but this is almost entirely random.
I’m so pleased and excited to live the rest of my life knowing I lived through something so traumatic, and so close to being devastating in ending my life. I didn’t die, I am here and I am ready for new adventures!
(p.s. Still not moved in to the cottage, next week I hope!! Bloody electrician cancelled so everything had to be rearranged. Ugh.)