June 8, 2018

What happens next?

My previous post made shocking reading I know, there's no way to sugar coat having a heart attack, I wish there was.

It has taken a long time to get back to anywhere near normal, both physically and mentally, I am getting there though, and if it helps others, and also raise awareness about a few things, I'd like to write a bit about what happened next.

In hospital, wired up to a heart monitor with a cardiac nurse watching every beat, its calming to know if anything else bad happens, you're in the right place. Returning home is a mixed bag of emotions,
nights spent almost counting the breaths, and checking my pulse. The early days are terrifying. Many Cardiologists are unfamiliar with SCAD, and are also unsure how to treat it. Since it happened to me, there has been a research paper published which includes a suggested treatment plan, recommending no stenting of the dissected artery, opting for medication instead (dual antiplatelet therapy, beta blockers, ACE inhibitors etc), I was on 7 tablets a day (now reduced to just 2!).

Next, was 6 weeks of taking it very easy, during that time I learned the hard way how vital resting was, did too much too soon, 2 weeks post SCAD I was back in an ambulance with chest pains again and an overnight stay on the cardiac ward. The arteries need time to heal, and that means giving the heart a rest. Following that, it's an echocardiogram (ultrasound of the chest), from this, they can work out the LV function or how efficiently your heart is pumping out blood, normal range is between 55-70%, this number will reduce if there's been heart damage or if there's heart disease. The heart damage can occur during a heart attack, the reduced blood supply causes the heart muscle to die off. At the moment, it looks like I have been very lucky, no muscle damage means my LV function is around 65%, totally normal. This is possibly because I sought treatment quickly, I was given aspirin and GTN spray within an hour of the symptoms starting, both took pressure off my struggling heart potentially reducing lasting damage.   

I have just had an MRI scan, am waiting for a CT scan next. These scans are looking for a number of things, one is investigating why the SCAD happened (but more on that in another post), they are also looking to see that the 2 arteries that dissected have healed, and also if there is any scar tissue left behind. At the moment, I'm playing the waiting game for all the results. 

SCAD has its own set of after effects, I have had a lot of chest pain, the theory is this pain is unique to a SCAD and is caused by arterial spasms as the arteries heal. It feels like a bee in my chest, I can feel a spasm coming on, it almost buzzes, then the pain starts. It comes and goes in waves, accompanied by dizziness, sweating, it's most unpleasant. These spells have gradually decreased in severity and frequency, but I do still have bad days.

I'm writing about this as SCAD mainly affects women, healthy women, it is not linked at all to heart disease or high cholesterol, and women are twice as likely to die from a heart attack than men. This is for a number of reasons, one being that women have a higher tendency to dismiss symptoms and not seek medical help, or when they do, the symptoms are dismissed as emotional, eg panic attack/anxiety based, rather than physical. More women also die of heart attacks or heart disease than of cancer. I found this on You Tube, not a SCAD but the heart attack symptoms are very similar to what happened in my case (yes, that is Elizabeth Banks!).

If you'd like to know more about what a SCAD is, this also helps explain what actually happened inside 2 arteries in my heart that November morning...

I joined SCAD research and have taken part is some additional tests which will go towards the international investigating going on to learn more about SCAD, why it happens and genetic markers. This research is taking place at the Mayo Clinic in USA and also at Glenfield Hospital here in the UK. This weekend there is a SCAD conference with many SCAD survivors attending plus the 3 UK based expert Cardiologists, it will be an interesting day on many counts, not least due to being in a room of at around 63 (at last count) others who all know exactly what I've been through as they have all been there themselves.

There are many reasons why you may experience chest pain, but if that pain comes with other symptoms, dizziness, sweating, pain radiating elsewhere, or if your instinct is just that something is not quite right, go get help, just get checked out. 

It could save your life.

January 24, 2018

Hearts and things...

Long time no blog! I'm not even sure if blogs are as popular as they used to be when I first started in 2007. The online landscape has changed so much with Instagram, Pinterest etc. But it is something I need to get back to. The prolonged absence has been for a few reasons, work, life and health just about covers it.

Health for me has been the trickiest issue. Firstly there was a knee thing. I call it a thing as it turned out to be quite bizarre once the scary side was out of the equation. In a nutshell, my knee swelled up one day a couple of years ago. A year after that, I noticed a hard lump inside the swelling. The hard lump grew so my GP sent me to see an Orthopedic Oncologist, suspecting it could be a cancerous growth. This meant I had 3 months of investigations, MRI scan, biopsy etc, to test to see if it was sarcoma. All very scary at the time, and a huge relief when I finally got a diagnosis of pigmented villonodular synovitis (PVNS), which is basically a joint disease that grows benign tumours. After another 3 months on the surgery waiting list, the tumour came out. I won't go into detail but it was very painful and took a while to recover from, and can regrow in the future, but for now, I'm having more physio to realign my kneecap, and so far so good.

Then last November, something happened that I was least expecting, I had a heart attack. 

Out of the blue, no prior symptoms, I'm not unhealthy (at least I don't think so!), had been doing pilates once a week since my knee surgery, low cholesterol, barely drink, don't smoke, and yet, one morning, the 2nd November 2017 to be precise, at 8.10am, I could barely breathe. It felt like my lungs and chest were being crushed, followed by a sharp pain in my heart. What followed is a bit of a blur, GP surgery, ECG, ambulance and hospital. At 3.30pm, the blood test results came back, and all of a sudden I was surrounded by nurses. There was troponin in my blood, which confirmed, I'd had a heart attack. I went into shock, trying to take in what was going on around me, to me. Nurses, doctors, heart monitors, blood being taken again, injections, tablets, my head was spinning.

I was admitted into the coronary care unit, and the next day moved again, by ambulance to a different hospital, for a procedure called an angiogram. At this point, I knew I'd had a heart attack, but the missing piece of the puzzle was why. An angiogram is not a very pleasant experience, and there were complications afterwards with excessive bleeding. It is done via an artery, which should seal up once its over, however, the first course of action with heart attack patients is what they call dual anti-platelet therapy, ie blood thinners. I didn't stop bleeding and spent the night with my arms elevated, in pressure straps and ice packs. The good news was the cardiologist found the issue. From my angiogram report...

"The main body of the right coronary artery was normal, however, there was an abrupt step down in calibre of both the posterolateral branch and the posterior descending artery with an appearance suggestive of spontaneous coronary artery dissection"

So there you have it, I had something called a spontaneous coronary artery dissection or SCAD. Quite rare, affects mainly women, and happens spontaneously. It cannot be predicted and cannot be prevented. In short, part of an artery either bruised or split, causing the blood supply to my heart to be compromised, which in turn caused an acute non-stemi myocardial infarction. I came home from hospital massively bruised and on a lot of medication. It's taken a couple of months to feel anywhere near normal, it's not normal though, its a new normal really.

Next steps are, I'm waiting to see a cardiologist in March and also have an assessment appointment early February with cardiac rehab. I've had an echocardiogram since it happened, so far, it looks like there hasn't been any permanent muscle damage to my heart, beyond that, the other important factor is the dissected artery healing, which I've been told can take anywhere from 6 weeks to 6 months. Long term there's a good chance of a full recovery, in time the medication may reduce, the lasting factors will be the memories of it all and the medic alert bracelet I now wear.

Just before all this happened, I'd begun work on another book, and in fact have ideas for 3 new books. Now I'm starting to feel better, am itching to get back to work so am going to keep going. One of the first projects I'm currently working on is a fundraising pattern, a softie that can be personalised for survivors of trauma, proceeds will go to a heart research charity initially. A cause close to my own heart right now!

*Edited to add - this post really only just skims the surface of what happened, I will write about it in more detail soon for the Beat Scad website.