How our charity raffle helps real people. This is Carly’s Story.

I was on maternity leave with my second child who was eight months old. I was incredibly sleep deprived. I had a reflux baby, and my husband and I had not slept for more than a few hours in a row for seven months. When I think back on that time now, I realise I was in a real state of haziness.

One Thursday morning, I started having double vision. I didn’t know what was going on; I was attempting to change some batteries on the air conditioner remote control and kept dropping them. The sleep deprivation had been causing headaches, dizziness and balance problems for a while. It was happening so often that I could not distinguish at that point that this day was worse than any other. I now realise, this was when the stroke started.

Carley was experiencing a lot of anxiety, nausea, and her headache was getting worse. She was losing balance and by Monday morning she started to lose sensation in her right arm.

I went back in for a brain MRI first thing on Tuesday morning and was admitted to the ED straight from the MRI. The MRI showed a number of minor and mini strokes, as well as a moderate stroke. The neurologists thought I must have had previous strokes that had gone undetected.

From there, over the course of a week, we went down a rabbit warren to look at what could be causing this. It wasn’t until day six that I had a consultation with a cardiologist who conducted a bubble study the following day to assesses flow of blood through my heart, and an trans-oesophageal echocardiogram to look at the function of my heart. That revealed I had a Patent Foramen Ovale (PFO), a hole in the wall between the right and left upper chambers of the heart.

I left the hospital as a high functioning stroke survivor with minimal physical and cognitive deficits at discharge. I was given secondary stroke prevention medication such as blood thinners, but had very little guidance on what to expect next. I was told that fatigue happens to 80 per cent of stroke sufferers, and to keep an eye on it as it can be pretty hard going. That doesn’t even come close to describing how debilitating it was.

I lost a lot of weight and strength. It was also not explained to me that physical and cognitive deficits can get worse and although I was fortunate to not experience further physical deficits, I went on to experience difficult cognitive or silent deficits. I also experienced speech problems which worsened before they started to improve.

It wasn’t until my six week outpatient appointment that a stroke neurologist looked at my MRI and said this isn’t multiple strokes, it was one singular event. I told him I had a hole in my heart, and he said you’re a healthy, young woman with no other stroke indicators or history, and that PFO is the source of your stroke. So it wasn’t until six weeks post discharge that we finally landed on the cardio outcome.

A month later, my PFO was closed up by Professor David Celermajer, an incredibly talent cardiologist, who does a lot of PFO procedures. It used to be open heart surgery but now is a much less intrusive procedure, where they go through a vein up to the heart using an umbrella like device to close the hole. The device is popped into the hole and the mesh fibre is released on both sides of the hole between the chambers.

It’s now been more than 12 months since my episode and I continue to make good progress but I am not back to normal. It’s been a long and slow recovery.