Harry Potter and the Aorticstenosis

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.

1 Year

TW: suicidal thoughts

I have been humming and hawing about writing this blog entry but if I'm going to be open about my mental health there's no point half-arsing it.

On Sunday 20th May I'm taking my dad to a football match for his birthday. He has been incredibly supportive of me in dealing with my mental health and following the tragic death of Scott Hutchinson and the Coronation Street storyline surrounding the death of the character Aiden Connor he admitted to me that he worried about me. He then asked me a simple question; had I ever been suicidal.

It wasn't a difficult question yet it felt like it required a great deal of thought before answering, even though I think he already knew the answer. I knew he was telling me that he was scared. I knew no matter what answer I gave he would be scared, because he'd know that either he was right to be worried or that I didn't feel I could be honest with him.

I told him the truth. He asked when the last time was.

On 20th May 2017 I was coming to the end of a great holiday, having visited one of my closest friends in Malaga then met up with my sister in Brussels. The next night I was due to fly home. I'd spent the day at the Gay Pride Parade with my sister and it had been an absolute belter of a day. The whole trip had been a welcome break from a turbulent period of my life and I had thoroughly enjoyed it. The time came for my sister to head home so we said our goodbyes and she went to get her Metro home. As soon as she was out of sight I felt the heaviest of black clouds descend upon me.

There was no obvious trigger, nothing that brought it on. It was just there.

From this point on I'm going to be brutally honest about it so if you're not in the best place now might be a good time to stop reading.

I went for a drink. Didn't help. Thought I was just tired from a week of travelling around so I got some drink and went back to the hotel. The thoughts swirling round my head grew louder and louder until they became almost deafening. I punched and slapped myself. I was irritated. I was angry. Angry at myself. Angry because I knew what I was considering. Angry because in the preceding days I'd been given a very clear window into the consequences of doing this and knew what I'd be leaving in my wake. Yet I couldn't shake this most awful of thoughts. Thinking of how I was going to do it. Getting to the verge of it and then just catching myself before collapsing on to the floor, crying. I couldn't do it but I couldn't shake the thoughts. Eventually something would have to give.

I got a phone call from my ex which began to pull me out of this black hole. I then had a conversation with a recently bereaved old friend which finished the job. I don't speak to either of them any more but I will be forever grateful to them for what they did that night.

The next morning the cloud was gone, the thoughts were gone and the world seemed a lot brighter.
It was as if a tremendous storm had battered me during the night only to disappear into nothing after leaving its mark.

Over the next few weeks I began to open up to some friends about this evening. I couldn't bring myself to tell my family what happened, just that I'd got extremely low.

I'll never forget that night as long as I live. It was such a horrible, bleak and hopeless night and I can't remember ever being more scared. But in some ways I'm grateful for it. It makes me appreciate every wee adventure with my friends, every family event, every new friend, every new memory. Every daft wee text from someone I love texting me to say they heard a song that made them think about me. All could have never happened.

My family and friends mean the absolute world to me and I still get angry at myself for considering putting them through this. They pulled me out of my hole into somewhere a lot brighter. They opened up and let me know I wasn't alone in this fight. One of them gave me my mantra for this fight.

Fuck it and fight it.

It's been a year since I had my biggest battle with myself. I'm still standing. I'm still fighting. I won't stop fighting this coward of an illness. I've taken a battering but made it through the storm.

If you're feeling down or find yourself in a dark place please talk to someone. Please don't suffer in silence. Because the world is far better with you on it. You mean so much to so many people.

Bad times don't last. Don't let a dark cloud steal your shine. The storm will pass. It will get better.

Samaritans - 116 123
Breathing Space - 0800 83 85 87
C. A. L. M. - 0800 58 58 58

Anniversary: The First Rant

It's been a year since first opened up about my mental health publicly on Facebook.

The catalyst for this was a tweet sent by that most charming of repugnant toads that is Piers Morgan in which Mr Morgan suggested that it was "utter nonsense" that 34 million adults in the UK were suffering from mental illness and that people should "man up."

The Mighty posted a wonderful article on this idiot's bile (https://themighty.com/2017/05/piers-morgan-tweets-man-up-mental-illness/?utm_source=Facebook&utm_medium=Mighty_MH_Page&utm_campaign=FBreg-MH&tmsignup=1&T=mhpage) which inspired me to open up. Because I had been trying to "man up" for years as my world began to crumble and fall around me before seeking help.

Fuck it and fight it.
____________________________

I'm sorry but a rant is coming.

I have been battling depression for a few years now, and I put off seeking help because I was trying to convince myself I was alright because all I needed to do was "man up."

Throughout this time I felt stupidly alone and isolated despite having some of the best friends anyone could ask for. It felt like for about a year and a half everything just stopped. Nothing would get better, no matter how hard I tried to "man up" I'd still be stuck in the same rut. It was only after I opened up to my friends and family and sought some help that things improved, and the love and support they gave meant far more than I could ever repay. For the first time in a long time I wasn't alone.

I know that Mr Morgan is as compassionate a person as Katie Hopkins or Voldemort, but the amount of people who suffer in silence because they expect to encounter this sort of attitude is horrible as is the toll it takes on them. Then again, I don't suppose it's surprising that such a loathsome man has such a loathsome attitude to the well-being of others.

If you feel low, don't man up, it doesn't help. Talk to someone. Being open with folk about your mental health is one of the scariest, bravest and best things you can do.

NHS

Three times in my life I've saught help with my mental health through the NHS when I've found myself in bad places. Not just feeling sad or lethargic. Places that were so dark, bleak and scary the prospect of making it out seemed at times non-existent.

The first two times I was put on a waiting list and seen over three months after seeking help. The third I was just given contact details for private counselling (don't get me wrong, great if you can afford it) as I was apologetically informed by a GP that I essentially wasn't depressed enough to warrant treatment through the NHS according to the protocols and procedures they have in place.

I want to clarify that I am a massive supporter of the NHS - without it I almost certainly wouldn't be here today and am not sharing this story to have a go at the NHS. Rather the government and organisations that are strangling it.

Despite the amount of media attention and column inches dedicated to politicians tackling the "ticking time-bomb of mental health" as they often refer to it, the simple fact is this:

Not enough is being done. Far from it.

Someone's mental health and wellbeing should never be used as some political tool to steal votes with empty promises.  It should be treated with the same seriousness we treat physical health. But we are nowhere near that yet.

Rant in F Major

Not a mental health post, just a rant for a change.

I find myself seemingly in constant despair at the shambles of a world we live in. We lie to ourselves about how good things are when the world collapses around us.

We tell ourselves we've never had it so good as we turn our homes into hotel rooms and invite strangers in for an extra buck.

We tell ourselves things are getting better as we turn our cars into taxis to get some extra cash.

We delude ourselves into thinking we make a difference by changing a profile picture on a social media platform, or by signing a petition that will be read once then ignored.

We don't read up on the events that are happening around us. We let someone else do a biased job of it for us and form our half-arsed opinions based on that, then we wonder "why did Brexit happen? How did Trump win?"

We continue to sell our souls in pursuit of some vague idea of something that resembles our idea of happiness rather than making our own happiness, and have become so selfish as a society that we promote people who disregard the happiness and wellbeing of others unless it suits their agenda or puts money in their pockets.

Bill Hicks once said it's just a ride. We have forgotten that it's all just a ride. And we have forgotten that we have the power to change it any time we want. "It's only a choice. No effort, no work, no job, no savings of money. Just a simple choice, right now, between fear and love."

Hopefully once we are free from the vice grip of the selfish generation who hold the cards at the moment we will wake up and make that choice.

Hopefully we'll reject fear and choose love.

Rabbie Burns, pals & reflections

I am not a connoisseur of poetry. I don't read anywhere near as much as I should. I am not a Rabbie Burns fanatic (despite crying when I found hewas dead when I was at nursery, roughly 199 years after his passing) but one ofhis lines is one that always stays with me.

 "O wad some Power the giftie gie us To see oursels as ithers see us!"

I wish I could see the side of me my friends and family see. I wish I could see the person they love, in spite of the meltdowns and the need for reassurance that at times must border on harassment. I wish I could see the person they want to hang out with, the one they want in their lives.

I know they don't see the me I see because I don't know if I'd be friends with him. They go out of their way to show me I'm loved and I'm not the person I see looking back from the mirror.  I am not my depression. I am not my anxiety. I am something so much more than that.

I am a brother, a son, a friend, a nephew, a cousin, a godfather and a warrior.

They let me see the me they love. Not the anxiety or the depression that distorts my vision. For this I am truly grateful. They show me the love they see in me and I love them for it.

Fuck it and fight it.

Conversations

People can be properly morbid can't they?

Whenever someone dies suddenly or in unexplained circumstances the first thought among everyone appears to be "how did they die? Did they do themselves in?"

Look at the reactions to the recent deaths of Dolores O'Riordan and Dale Winton. Only after they've gone do people seem to en masse give a shit about their mental health.

It's easier to discuss the mental health of someone who's no longer here than that of someone who's living because there's nothing that can be done to help them. It's easier to discuss what could have been done than what can be done because it can be a fucking uncomfortable conversation. For someone who's never visited that black place it can be extremely difficult to even get a sense of how life is for someone who lives there and try to help them out of it.

But it's surely better having one tough conversation with someone as opposed to endless sad conversations about them.

If you know someone who's in that black place please talk to them. From my experience even the daftest wee conversation can make a massive difference to that person.

Love each other.
Fuck it and fight it.