Don't ever let people stand in the way of your goals.
Only 2% of people over 65 get diagnosed with aortic stenosis.
I was diagnosed at 3. I couldn't be held back.
I'm taking a break from discussing my mental health (which is pretty decent just now) and instead shall tell you my story of living with aortic stenosis, going through open heart surgery, almost dying and my life afterwards.
(Spoiler: I survived)
As I said I was diagnosed at the age of 3. Apparently I had a really severe coughing fit and my parents were so concerned they called the doctor to come check me out (ah the 90s). The doctor was doing his thing with the stethoscope but was struggling a bit to determine what was wrong with me. When my parents enquired, he snapped with frustration, telling them he couldn't hear anything over the murmur.
Clearly "what murmur?" wasn't the response he was expecting.
I was diagnosed not long after, meaning that I've never really known a life other than one of regular hospital visits and check-ups. Aortic stenosis is a narrowing of the aortic valve. Most people with mild to moderate aortic stenosis do not have symptoms. Symptoms usually present in individuals with severe aortic stenosis, though they may occur in those with mild to moderate aortic stenosis as well. The three main symptoms of aortic stenosis are loss of consciousness, anginal chest pain and shortness of breath with activity or other symptoms of heart failure such as shortness of breath while lying flat, episodes of shortness of breath at night, or swollen legs and feet. As far as I can remember mine was mostly asymptomatic though I was prone to shortness of breath after activity, which I mostly thought was because I was chubby.
The main treatment for this condition is a valve replacement, and the decision was made to try and put off this procedure until my body was ready for the adult valve, so that I would only have to go through the procedure once.
It is testament to the strength of my parents and the wonderful work of the staff at Yorkhill Hospital that I went through most of my childhood without the foggiest idea of how serious the situation really was. I knew they were looking after my heart because there was something strange about it - there weren't any other kids at school whose parents picked them up at lunchtime once or twice a year to get their chest examined by doctors - but was sheltered from the true severity of the situation, even after my first operation at the age of 11.
Because it is quite rare to have someone so young diagnosed with this condition, I would occasionally be brought in for student doctors to practice their craft on. This probably should have set off some kind of alarm bells, but I was being told to lie in bed rather than be at school and being paid in Malteasers and Irn Bru so I was too content to think much of it. I went that frequently that I picked up on key phrases being used, and on my last such visit at the age of about 10 blew the minds of some trainee doctors who were stuggling to diagnose me by telling them to "check for the thrill in the sub-sternal notch."
My first operation was a keyhole procedure at the age of 11. In hospital for 3 days then off school until after the Easter Holidays. This was essentially a procedure to buy some time so that the valve replacement could be put off. I had another such procedure at 13, just before school finished for the summer, but this one wasn't quite as successful. The big operation was going to have to happen sooner rather than later.
I came home from school one day in the August to find my mum home before me. This was rare, as both my parents were teachers at further away schools so usually I was the first one home. My dad wasn't far behind. It turned out it was a good news/bad news situation.
The good news was they'd got me tickets to see Franz Ferdinand that November (ah 2005). The bad news was operation was scheduled for the start of September.
A few days before the operation we went to a family friends 40th and I spent a lot of the night with my friends trying to sneak some cider. I didn't feel like I needed any major surgery at all, but there we were. 3 days later I was in Yorkhill being taken down to be knocked out and cut open. (Insert joke about typical Glasgow night out here)
I woke up staring at a neon light on the ceiling in intensive care hooked up to a plethora of paraphernalia. Wires were coming out my mouth, nose, neck and chest. The chest wires were the most obvious as they were below a big feckin wound that wasn't there when I last closed my eyes and attached to a big grey brick of an external pacemaker. After a while - I don't know if it was hours or days (ah fatigue and painkillers) - I was moved back up into a room in the ward.
All seemed well. For a day or so.
I started feeling ill. Wretching. Being sick until there was nothing left to bring up. The nurses were worried. Doctors were sent for. They too were worried. My mother was terrified. Machines were brought into my wee room. It turned out I had a build up of fluid around my heart and I needed to get my chest drained (similar to getting your stomach pumped only higher up and a bit more dangerous) but there was no free theatre in which to carry out the procedure. There was shouting, crying, frantic phonecalls; then a free theatre. I was rushed down and again woke up hours/days later looking at that neon light in intensive care, hooked up to a ton of machines.
It wasn't exactly "in the nick of time" but it was less than half an hour from game over.
In the following week I was fitted with an internal pacemaker (so long, brick) and started adjusting to life on new medication to help the valve and prevent blood clots. I was finally sent home a week later.
It was the end of an incredibly challenging chapter in my life. But it was far from the end of the story.
Since 2005 I've walked this strange line of not being sure if I'm disabled or not. I can still have a reasonably normal life but must take my medicine (warfarin, which is a type of rat poison) every evening from now until the day my heart stops beating.
It'll also be the day I escape from the ticking. As the valve opens and shuts, it makes a clicking noise. 95% of the time it's not a factor. The 5% of the time it can be a nightmare. An irritation I can't escape or control, usually only bothering me when I try to sleep at night or when I'm trying to relax in the bath. Once I hear it it's incredibly difficult to get away from it, to the extent that when I go to bed or for a bath I put background music on to try and cover it. It may sound benign, but there have been times when it's driven me so crazy I've wanted to rip the bastarding thing out of my chest just to escape the incessant ticking.
I have to go for regular check-ups to make sure my blood's ok. I need to go for annual pacemaker checks and get the valve checked every two years. Despite the fact I'm constantly being informed that my recovery is going better than expected I still get the fear that every appointment will be the one where they find some complication or anomaly.
I'd be lying if I said that I didn't think going through this had contributed to my mental health issues. Whilst I think I may have shown signs of anxiety beforehand it wasn't until a year or two after these procedures that I started to struggle. For a while I wasn't really sure how to cope with what I'd just been through. I introduced myself to people as a guy with a big scar. My MSN addy was scar-chest. For a while it felt like it was all I was. I think going for hospital check-ups where everyone else is in their autumn years (to be exceptionally polite, some must have been Victorian) kind of knocks how you view yourself. It doesn't help when you overhear them passing comments like "there's fuck all wrong with him."
Am I disabled or am I not? I'm honestly not sure.
The most recent issue I've had with it was moving to a new practice. After over a decade of having my blood checked by NHS Lanarkshire who were fantastic, I moved to Edinburgh. And so began 2 years (so far) of arguing. Whilst my dosage had previously been kept as stable as possible and the nurses used common sense should my blood be too thick or too thin, the second I moved my dosages were all over the place, changing weekly with the nurses totally reliant on some computer algorithm.
Not to say it's a bad system, but I find it difficult to trust something that tells me my blood's too thin then tells me to wait a few days to reduce the dosage. In Lanarkshire if it was out of range it was "increase/decrease one night, come back next week." In Edinburgh it's been either "increase/decrease in a few days, back next week" or a complete and utter shake up of my dosage altogether, meaning I've gone from check-ups every 4-6 weeks to every week. Luckily my employer has been very understanding, unlike previous ones who were more difficult to deal with.
This constant changing of my doses led to my blood being so thick that I required injections to rectify the situation. It stresses me out and makes me feel like I'm fighting some invisible war with myself. Quite like with my mental health in fact.
There are other wee irritating side-effects (no tattoos or piercings for example, which tbh I think my folks were a bit grateful for as they were worried I'd end up covered in them like Travis Barker or something) but they are just that; irritating. The whole situation is immensely irritating and I do sometimes find it difficult to not go "why me?" because I wouldn't wish this ordeal on my worst enemy and I'm genuinely fearful of passing it on to anybody else.
We all have our burdens to bear, I guess. This one is a heavy one. It's just my head and my heart that are fucked up. Who needs them anyway, right?
Fuck it and fight it.
