5. Shit. It's Happening Again... is it?
Published 11th September 2021
Diary of a SCAD Heart Attack Survivor -
4 Months On
Spontaneous Coronary Artery dissection - a heart condition that can't currently be predicted or prevented. Yet.
The sudden, sharp, breath-taking chest pain has hit me.
Like being shot, (obviously how I imagine being shot, having never been shot at) but not by a bullet, by something much bigger.
Maybe like an ice hockey puck?
It feels like something hefty has just been fired at my chest.
BANG!
And I’m suddenly, inexplicably out of breath.
When I call on Big Tall Baldy Guy (or Cameron, as most other people call him) I speak through gritted teeth, the pain all-consuming as I force my breath, clutching my chest, bent double as I crawl towards the front door, where he’s working in the garden.
I cannot believe it.
This CANNOT be happening again.
Remember I said in my last post that my new mantra, had been,“90% never have another. 90% never have another. 90% never have another.”
And my thinking had been:
if I haven’t done anything ‘wrong’ to bring the condition on,
then I cannae do anything more ‘right’
so I may as well just get on with life!
And now. Bollox.
This feels exactly the same.
Damn and damnation.
Now.
To any cardiologists, medical professionals or just those who think they know better…..
PIN YER EARS BACK!
I was NOT worrying.
I did NOT feel a ‘slight chest pain’ and immediately ‘panic’.
For the record, I am NOT a hysterical female who is panicking and rushing to get in to A&E.
I mean, REALLY?
Who the hell wants to go to A & E?
It was about 10am on a Saturday morning and Cameron and I had been up about an hour. He was working in the garden, I was getting ready to go to a medical appointment, my first ever breast screening appointment.
(Oh yep, the fun of reaching a certain age for a woman, just keeps on coming, eh?!)
And, to be honest, I was quite looking forward to a wee jaunt out! Out of jammies, make-up on and everything!
Lockdown has a lot to answer for….
As I sat in front of the mirror putting on some make-up, I remember thinking how lucky we are in the UK that we get all these cancer screening appointments FOR FREE! I mean! Just how privileged are we?
OK, so I can’t say that I was exactly looking forward to having each boob squeezed between 2 plates, but hell, I’ve experienced a gastroscopy and colonoscopy in the same sitting, by a doctor who seemed hell-bent on ripping my intestines apart, plus an angiogram ( see previous post on how much ‘fun’ that is) so this?
T’will be a walk in the park.
As I begin to apply some mascara – bang, with a small ‘b’, in-between my shoulder blades.
"Whaaa.... whaaat? What was that?"
My Conscious Brain questions my Body, looking for more information.
My Body replies,
“um…. kinda felt like the same thing
that happened in March to be honest”..
Conscious Brain, “really? But 90% of SCAD patients never have another, have you not got anymore info to send me?”
My Body, scans itself, looking for more clues. “Hmm… nope, nothing else to report Conscious Brain”
Well, this is annoying...
I continue to apply my mascara. There is no bloody way I am going through this again.
Nope! Not me!
I am just going to ignore it.
I know that many SCAD patients have 'ongoing intermittent chest pain' post SCAD event, and I have had…. but not like this.
And anyway, I have an important, free, NHS appointment to get to and not not going to that
I finish my (limited) make-up routine to find my jacket and handbag, half listening to my Body,
“anything else to report Body?”
“Nope” it replies, "just well, you know, this pain in-between the shoulder blades. It’s still there…."
“Well,” I tell it, “it can just DO one." I refuse point blank to have any more ‘unexplained pallaver’.
I am healthy, I'm feeling great!
And I am out of my ‘lounge-wear’ ready to go to ...
OH. BLOODY. HELL..
NO!
UUgh
BANG! WITH A VERY CAPITAL ‘B’, the pain hits me.
Suddenly.
Painfully.
Right in the centre of my chest.
Bang
Kerrist.
I still absolutely refuse to believe that anything is happening again, pick up my bag and make my way down the stairs.
Deny! Deny! Deny!
The power of the mind can overcome EVERYthing…
Um.. apparently not.
Once downstairs, I jack-knife in 2, collapsing onto the sofa .
My breathing is now laboured, and I’m feeling faint, dizzy.
Bollox, bollox bollox.
“OK, OK, what we doing babe, 999?” Cameron asks, frozen, knowing but not knowing.
“NO!” I hiss through gritted teeth, “WAIT”
“Give it a few minutes, it might pass, just please, gimme me 5 mins.” I will not go back to A&E again. The condescending looks and eye rolls from the (female) staff the 1st time, the ‘diagnosis’ of “your heart is fine, we don’t know what happened but you can go home” the 2nd time - weeks after the original event.
No bloody way am I going through that again.
Cameron sounds unsure.
“Well, just in case, I’ll get your hospital bag yea?” “Where is it?”
I’m beginning to not think straight, I can remember where it is, but cannot articulate to him where it is,
I desperately want to 'wait it out' but the pain is bad. Intense.
I'm doing the particularly female thing of, 'let's not bother anybody', but I can't breathe. And, it's the same as before, but much, much more intense.
More acute, sharp, really bloody, breath-takingly sore .
My peripheral vision starts to go black.
And I want to give up, go to sleep. Sleep for a very long time. Somewhere in the deep recess of my brain, I know that this ‘wanting to go to sleep thing’ is a bad thing, but oh, the darkness is calling me, sweet, beautiful oblivion…..
Cam places the 999 call.
"Yeah, she had a SCAD heart attack in March"
The next 20 minutes pass in a blur. I can hear Cameron speaking to the 999 centre but I feel weird, like my mind is all fuzzy round the edges, as if in a waking dream. I’m definitely conscious, but maybe not for long?
I just want to go to sleep for a very long time.
Maybe then, the pain will stop.
The 999 responder tells Cameron to get me to chew 4 aspirin, which I do, hardly noticing them at all whilst Cameron looks on, squirming at the thought of what they must taste like.
I tell him later, I never even noticed and can’t really remember eating them.
Within about 2-3 minutes the intense pain has gone! Amazing! **
Who knew chewing 4 wee aspirin could be SO powerful!
Result!
God, I wish I had done that sooner, then we might not have called 999.
I say this to Cam, who shakes his head in disbelief, “aye right babe, you’re nuts if you think we weren’t calling them”
** Update 2024 - this was probably/actually an acute angina attack or severe coronary artery spasm. A diagnosis I received years after this episode. It is possible that the pain subsided after the spasm stopped, rather than the aspirin having had any effect. A coincidence. But we’ll never know for sure.
If you have a rare or little know about condition, have your paperwork to hand.
Your leaflets on the condition, previous medical letters, results etc.
And remember, take a few copies with you! They will disappear in to every corner of the hospital!
The paramedics arrive, quite quickly actually and we give the paramedics a SCAD leaflet.
They’ve never heard of it.
So, as I’m beginning to be ‘back in the room’ I have to start teaching… ffs.
Whilst in the van, sorry I mean ambulance, the female paramedic keeps asking me if I’d been worried or stressed about going for the mammogram. She asked in a variety of different ways, but always trying to get the answer she was looking for i.e. ‘the female patient is stressed and having a panic attack’.
I’m too tired/ill to be angry or annoyed, she doesn’t believe me, I just ignore her.
On arrival at A&E they hand the leaflet over to the staff there.
It made things SO much easier, as well as causing some excitement within the department.
A nurse who happened to be walking past me, overheard an exchange between ‘nurse who admits you’ and ‘nurse at Base B’, discussing my SCAD condition, “SCAD! I know that! I know that!” she says across to them, “That’s heart attacks in women, isn’t it? I learned about that!”
Then, “Ach, dinnae tell me it’s a man?” she sounds perturbed.
I understand. You don’t want to have learned all about a condition and then find out that some bloomin’ patient screws up the theory!
“No”, I say meekly from where I’m sitting behind her, “it’s me”, so she becomes my care-giver, yeah!
However, in true Jilly style, we have a problem.
My troponin levels are negligible, nothing like the same as the 1st time.
I have since found out that,
for some SCAD patients,
who have had their SCAD visibly show up in an angiogram,
their troponin levels were NOT elevated.
but now this just adds to the problem that the medical staff have.
How the hell do they treat me?
At the time, I did not know the above and I am feeling SUCH a fraud.
And such a pain in the ass to the staff.
And so confused.
I felt everything exactly the same as before except much more acutely. The pain in the chest was excruciating, the onset much more sudden, sharper and I wanted to die.
My exhausted body does not want to work. On trying to ‘pop round to x-ray’ my legs give way. Just like last time.
I desperately need to lie down and sleep for about a year.
My nurse was so amazing and I’m SO annoyed that I cannot remember her name, she really needs a special mention.
After our last chat, ‘Chest Pain’ nurse arrives.
There’s no messing with this very capable lady.
She asks me 4 vital chest pain questions and, within about 5 minutes she’s got me a CT Scan.
Questions From The ‘Chest Pain’ Nurse
Did the pain come on suddenly and for no reason? Yes
Did it start between your shoulder blades/or chest? Yes
Is there pain anywhere else e.g. tummy, shoulder, arm? Yes
Does it change with movement? No
“The radiologist on duty today has a specific interest in SCAD, so she’d love to have a look at you, and on a Saturday afternoon” she cries, “amazing!”
I cannot believe that my troponin levels are not elevated, so I'm overjoyed that they are going to have a look inside. I am so lucky. Considering that I feel exactly the same as last time, at least we'll be able to see what's going on from the CT scan. I feel certain that that will clear everything up and then I can get some of that magic drug they injected me with last time. God that was good!
I mean, I don't want to have had another heart attack, obvs. but at the very least, I would stop feeling like a total fraud, taking up precious space in A&E.
So is it
fingers crossed that they DO find something or
fingers crossed that they don't ?
What the hell is going on with this so-called “beautiful, healthy heart” of mine ?
Summary (& with 3 years of hindsight)
Chest pains after a SCAD heart attack can be common
For me, angina and heart spasms pain were infinitely more painful than the heart attacks
(who knew?!)Take all paperwork with you to A&E
Take loads of copies and NEVER give away your last one!
You will never get any of them backIf medics are wittering on about you being stressed say this:
“I ‘ve experienced severe stress before, I know how I feel when I am stressed,” then give an example “when someone died”, “when I was moving house,” “when I lost my job” or whatever.
“I was not and am not stressed however, you not believing me is beginning to stress me the f*** out.”
(OK, maybe’s don’t say that… try “you not believing me is causing me to become very, very frustrated and now, I am stressed”Then ask for a troponin blood test to be done.
If they still refuse - and you know something is very wrong - say,
“I’m not saying that this is what is wrong with me however, I do know that some SCAD patients can have normal ECGs and normal O2 levels but they’ve still had a SCAD heart attack.”(Yes, for some SCAD patients troponin can also be negligible, but dinnae say that for now.
Merely mentioning troponin will hopefully make them listen to you)
Coronary Heart Disease (CHD) kills more than twice as many women as Breast Cancer in the UK every year,
and is the single biggest killer of women worldwide.
Despite this, it’s often considered a man’s disease.
The British Heart Foundation, Women & Heart Attacks.
SCAD is when a tear or bruise develops in a coronary artery that prevents normal blood flow.
This can cause a heart attack, heart failure, cardiac arrest and can be fatal.
Current data indicates:
90% of patients are female with an average age of 44-53,
– many of whom have no or few heart disease risk factors.
ECGs and O2 levels may be normal.
Assess troponin levels, repeating 4 hours later.
(NB. Trop levels may be clinically insignificant)
For information:
https://beatscad.org.uk/what-is-scad/
https://academic.oup.com/eurheartj/article/39/36/3353/4885368