The enemy within

Monday 18th March 2019:

The chest pain had been gone for more than 24 hours and I really felt alive on Sunday morning…high on good vibes. I’ve got this, I thought. I’m now bed blocking. They’ll want rid of me.

I spoke too soon though, didn’t I? The hot flushes came over me again…up to my head like it had been filled with warm honey and then an oozing sensation down my legs, followed by that odious racing heart rate.

The attacks are exhausting and attempting to stay calm while they are happening is tiresome too. Constantly watching the monitor while deep breathing and willing down those numbers feels like a game of wills, me against my broken heart. The enemy within.

It’s hard not to think of it like an opponent. After all why is it failing me? I’ve treated it well and given it regular work outs. I’m bloody angry with it if I’m honest. I feel like a ticking time bomb even though in reality I’m not. But still I’m baffling the experts.

The cardiologist has now stopped the amlodapine tablets for angina in case they were the cause of my palpitations. The trouble is, now the chest discomfort has returned so the GTN spray has been administered. I naively hadn’t considered the side effects of medication and a “perfect fit” still needing to be found for me.

I’ve had another heart ultrasound and am awaiting the results of that to discover whether or not I will be sent back to Taunton for an MRI. There is now some thought that the cause of my heart attack could have been a viral infection. That old chestnut. Mind you it would probably be the most welcome outcome as it would suggest there wasn’t much I could have done to prevent it. And maybe one day I can learn to love my heart again.

The good news is I’ve now been moved out of acute care onto a general heart ward as my other observations have continued to read well. I no longer need constantly checking. One step closer to the exit, if I’m lucky.

The bad news is I’m now in with a load of old ladies, some of whom have been here for several weeks, who constantly complain about the food and chat as though they’re on a social outing. I guess it beats the mixed accute ward though where last night I stumbled upon an elderly chap…let’s call him Bill…who had forgotten to lock the toilet door and was taking a leak in the dark as I went in to brush my teeth. “Nice pyjamas,” I said.

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Reset

Saturday 16th March 2019 continued:

After yesterday’s terrors, today has been a good day. Periods of calm, absolutely no chest pain or heart rate rocketing madness. I had a shower, shaved my legs, plucked my eyebrows and felt…well…almost normal. It’s the small things. I’m not quite up to raving and misbehaving…more’s the pity after I listened to my running playlist today…but it seems as though the concoction of medication is working. I did have to sit down and catch my breath for a good 10 minutes afterwards mind.

I’m now playing the waiting game as I need to head to Taunton again this week for a cardiac MRI, so they can fill in any gaps they may have missed, and they won’t discharge me until the results are back.

Basically, when the CT scan was carried out after my heart attack…that still sounds utterly ridiculous…some nodules were found on my lungs…because quite obviously I needed another complication.

The cardiologist and radiologist are pretty certain it’s a rare lung disease called sarcoidosis. I Googled it, so you don’t have to, and it doesn’t look all bad. It can cause respiratory problems like shortness of breath and a persistent cough but I don’t appear to present any of the symptoms. The docs now want to check it’s not on my heart as it can affect various organs. I also need to see the chest specialist.

I’m bloody sure there’s some sort of guardian angel watching over me in here though. The coincidences are just too weird. After finding out the ward sister, Cheryl, knew Sooty, today I discovered another nurse in the unit, Julie, lived on the same housing estate in Texas as my good friends the Prices. Paul is on secondment in Fort Worth, I’ve known him since we were kids, I stay in his and Jen’s house with our mate Andy when I visit our hometown, Preston. I can’t even begin to imagine how this is possible. But I like it!

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Well that was unpleasant

Saturday 16th March 2019:

Yesterday started incredibly well with a visit from therapy Labrador dog Sam but very quickly deteriorated into a grotty 24 hours.

For the first time since admission the nurses allowed me to get up and about and actually use the bathroom, alone, instead of wheeling a commode into my bay and drawing the curtains.

Well this is a bit more dignified, I thought, until the sister, Cheryl, asked: “Have you opened your bowels today Sue?”…showing me various poo pictures on a stool chart to choose from. Joy!

Then the chest pains came hard and fast, just like indigestion. All I wanted was a glass of milk. I’d felt that acidic flush at home occasionally too for the past few months. I’d only ever previously experienced it when I was pregnant but I had put it down to having irritable bowel syndrome (IBS). Not now though. I pressed the bell for the nurse who administered my GTN spray. A rush of warm rose up to my head and then down to my feet as the spray got to work, allowing greater blood flow. Within five minutes the pain was mild and manageable.

Dr Chung the cardiologist paid me a visit and diagnosed angina, adding yet another tablet to my growing daily list. “I’ll be rattling soon,” I joked.

I was absolutely exhausted so after my lunch of cauliflower, lentil and spinach curry I pressed the button to lay my bed back and snuggled onto my left side. Bad idea. I’d only been asleep for about 20 minutes when the alarm on the machine I was hooked up to started to ring. My eyes shot open, I looked at the nurses who were all looking over at me from their station and I said: “I felt that.” To which Adrian, the nurse, replied: “I saw it on the chart.” My heart rate had increased to about 127. Deep breaths and it came back down again. My blood pressure was fine. Then Cheryl brought over the print out from the machine from the moment I’d experienced my heart jiggle and flutter. “That was a palpitation,” she said. An irregular beat for just a few seconds possibly because I’d aggravated my heart by lying on my left side. I returned to my back. “I’m not bloody moving from this position now,” I said.

I still wasn’t safe though as for the rest of the afternoon I had several episodes where my heart rate rose quickly and I had hot sweats. It wasn’t a usual panic attack but it was happening every time I tried to drop off for a snooze. Cheryl again brought over the print offs. This time my heart rate had not been irregular, just fast. Thankfully it hadn’t gone into fibrillation, but that didn’t stop me worrying.

In a fit of terror I rang my friend Liam, who like my other mate Lucie – whom I called the night before when I was having a wobble – is medically trained. I wailed and blubbed down the receiver: “I don’t want to die.” What I actually expected him to do all the way from London I have no idea but for the first time that day I felt safe.

It all happened during the time Sooty’s funeral was taking place. He’d previously sold used cars to Cheryl. Small world. I turned to her and said: “He’s determined I don’t forget about him even if I couldn’t make it to the church.”

Until we meet again Sooty…

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The Hokey Cokey

Thursday 14th March 2019:

In, out…back in again. After being discharged on Tuesday I enjoyed the hospital’s culinary delights so much I was re-admitted via A&E yesterday and am back in the coronary care unit. It’s like the Hokey bloody Cokey!

I joke about the food here but despite it’s “microwaved to within an inch of its life” appearance it actually tastes pretty good…most likely because I haven’t had to rustle it up at the same time as holding down a full time job, running a home, parenting my eight-year-old daughter Dakota-Skye and seven-year-old son Huey-Jay (who by the way are dealing with this like little legends), chairing the school PTA, heading a netball team, as well as ensuring the family fish, Rhubarb Junior, Custard and Sprinkles, and Stripey Dave the cat are fed and watered.

After a stream of visitors and floral deliveries I got what I thought was heart burn on Wednesday afternoon. That’s kind of how my heart attack started but I still ignored it this time for a couple of hours, allowing it to get worse and worse. I must be hungry, I figured. Maybe it was the statin medication…I’ve not had one of those before…or perhaps it was the garlic in the “good for your heart” soup my mate Amy had specially prepared for my lunch (I have the best friends).

Then I started to get pins and needles in my fingers, nose and cheeks, and my arms became heavy. I was hyperventilating. I was having a full-on panic attack…I’d experienced one of these before. But was it just a panic attack, I wondered, or was my heart having a blip too?

I’d been prescribed glyceryl trinitrate (GTN) spray the night before which relaxes and widens the blood vessels and helps prevent a heart attack and gets rid of chest pains. So, of course I used it straight away, didn’t I? Particularly given what had happened on Friday. Did I hell!

But why? I’ll tell you why…because I’m 40 and can’t possibly be having a heart attack! I still can’t believe I had one on Friday.

Blood tests have today revealed that unlike last time the cardiac enzyme troponin is not raised in my ticker. Therefore, there was no sign of attack this time. But I am having regular centralised chest pains, like the most disgusting indigestion you can imagine, and guess what? The GTN spray does exactly what it says on the pack. So now I won’t let it out of my sight.

However, I still need to be pain free before they’ll discharge me. And if it’s not a heart attack that’s causing the pain, what is it and how can it be resolved? All questions that are baffling the experts too given my observation readings are normal.

What we do know is that when dye was injected into the arteries of my heart during Tuesday’s angiogram to test my blood flow, my heart went into spasm. I watched it happen on the screen in a sedated state. I actually saw it jiggling about…mind blown! The spasms happened later when they gave me intravenous morphine too. Totally unpleasant, so I’m sticking to the drinkable version (oramorph) from now on.

I can’t tell you how many times my life has flashed before me in just six short days. Never more so than when I was rushed off for a CT scan when it was feared my aortic valve was torn…code for being on the brink of “lights out”.

Tomorrow we say goodbye to our good friend Sooty whose heart couldn’t quite keep up with his big personality. Sadly, I’ll miss it but…and I’m not religious…I’ve felt him with me throughout the past few days. And what a comfort that’s been. He was only 44. Just unreal.

I’m definitely suffering some sort of post traumatic stress disorder and have been left pondering the meaning of life.

We are defined only by our experiences. I wish having a dodgy heart didn’t have to be one of mine, but it’s tough…it is. I’ve been told how brave I am. I’m not, I’m shit scared but what other choice do I have? Besides, my gran is 91, she has dementia and I had planned to run the half marathon to raise funds for Alzheimer’s Society…there is not a chance I’m letting her outlive me! She would have hated that even more.

Such a funny thing is life and I’ve totally stolen this reference but what if the Hokey Cokey really is what it’s all about?

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I’m sorry…what?

Wednesday 13th March 2019:

So last Friday I had a heart attack. How utterly ridiculous that sounds…especially saying it out loud. I’m 40 for fuck’s sake. I was training for a half marathon. I’ve run marathons before. I’m fit. My resting heart rate is 50-60 beats per minute, my blood pressure is about 110/60 and my cholesterol is 4.4.

Turns out being “healthy” is probably what saved me.

The cause was a tiny tear in a ventricle in the left side of my heart which works at 49% of the normal 55% rate.

I’ve never written a blog before but I’m a journalist. I’ve worked for the BBC for 20 years. Writing is what I know. Vocalising and putting it down in black and white is the only conceivable way I can think to heal myself. So here I am.

Right now I can only say things bit by bit as reliving the whole terrifying experience makes my chest hurt…and then I fear it’s happening again…and then I start to cry. I really don’t do crying but I guess I must. So, I think I’ll start small.

This blog is not just about fixing me mentally but making sure you are aware of how important it is to know the warning signs. If it helps just one of you, having gone through it myself will have been somewhat worthwhile.

Let me tell you now you’re not safe, none of us are. We think we’re in control of our bodies but it’s our organs that have the reins.

I just want to start today by telling you how it was for me. My heart attack was minor. A Type 2 as my cardiologist described it. I thought I’d had an allergic reaction. I even told my husband, Andre, to stay at home when the ambulance transported me off to hospital, reassuring him I’d get a taxi home when I was discharged with nothing more than the equivalent of a plaster.

It was the end of the week and I’d been due to run five miles as part of my London Landmarks Half Marathon training regime. But I was tired, part of me wondered whether I would be able to compete at all. It’s the first time I’d felt like that. I’d run 10 miles the previous week and felt fantastic. I’d even done two three-mile runs, a four-mile walk and played netball that week.

The plan had been to go out with my running buddies Sophie and Ruth but they both cancelled for various reasons…and thank God they did. I had still thought I might go out pounding the pavement but it was drizzly and cold and the invitation to join my friend CJ for a glass of red was much more tempting after a busy working week.

So there I was, sipping my second glass of Merlot when every single muscle from the bottom of my rib cage to the top of my chin went into spasm. As they tightened harder and deeper I tried to loosen off those in my shoulders…rolling them, massaging them with my fingertips, lifting up my arms. I felt like every part of that section of my body had indigestion. How mad is that? Yep, definitely an allergic reaction, I thought. It couldn’t possibly be anything else.

I then did probably the most stupid thing I could have…I made an excuse about being tired and left. I was in a safe place, with a great friend. But like a dying animal I took myself off. I pulled on my boots and tied up the laces as quickly as possible, barely able to breathe while bending over. I exited the house and started to walk the 300 metres back home. Vulnerable.

I got halfway up the hill between the two streets and I had to call Andre. My arms felt like someone had strapped an anchor to each of them, I couldn’t prise them from my sides and I could barely carry my handbag…which admittedly is like a cement bucket, but even so.

When finally and safely on the sofa at home and awaiting the paramedics, I asked Andre to massage my back and shoulders. It was the only thing that helped ease the constricting sensation, though it didn’t actually let up for about 45 minutes to an hour.

It was at this point I admitted I’d felt that hideous discomfort before…for about five minutes while sitting on a train. I’d put that episode down to carrying a heavy bag. Maybe I’d pulled a muscle.

The more I thought about it I realised there had been two more occasions when I’d had similar warnings. Both of these happened while I was out running with my friends. The sensations hadn’t been as central and were more left-sided. I noticed I had a stiff neck and muscular pain in my left shoulder blade and I was forced to swap the mobile phone running strap from my left arm to my right, as my left felt restricted. But the weather was freezing so it must have been that, right? I must have been tensing up to keep warm. I then asked Sophie if we could walk up the final hill home as the twinge was worsening. She asked if I was alright, to which I replied with a smirk: “It’s ok, it’s not as if I’m not having a heart attack or anything.”

The irony is not lost on me.

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