It was a normal day in late June 2018.  I was on a study day in the education centre of the large hospital, where I had been working for a month.  That morning was unremarkable, but as it came near to morning break, I started to feel a bit funny.  For context, I was 49, and while I was managing to work, I’d been struggling with chronic fatigue syndrome for nearly twenty years after a bad bout of ‘flu.  During that time, my three daughters had grown up, and my grandson had been born.

I went to the toilet, feeling nauseous, dizzy, and very weird.  As I sat there, I had a sudden pain in the left side of my head and the strangest feeling of cold liquid slowly running down my body.  I tried to stand and realised my left side didn’t work.  I had to lean on the cubicle wall.

I knew I was having a stroke.  I was surprisingly calm – I just needed to figure out how to get help.  By leaning on the wall I made it out of the toilet and back to the classroom.  I asked my co-workers to help.  I said I thought I was having a stroke.  I couldn’t sit on the chair as I thought I would fall off, so I laid on the floor.

The resus’ team put me in a wheelchair and wheeled me across the road to the emergency department, where I spent most of the rest of that day.  I was extremely “light phobic” (photophobia) so I spent it with a hoodie over my head.  The only thing that made the headache bearable was morphine.

Everyone said I had a hemiplegic migraine.  I do have migraines, but I was convinced I’d had a stroke.  Eventually they admitted me that night.  Strangely, my oxygen levels were low, but I wasn’t breathless.  No one knew why.  Two days later, I finally got put in a Magnetic resonance imaging (MRI) machine.  The results a were shocking.  I’d had four full-on strokes.

Because of my oxygen levels, I had a chest x-ray, and was told that there was a shadow on my right lung.  More scans revealed it was something I’d never heard of  a pulmonary arteriovenous malformation (PAVM).  Apparently this had let through a clot shower to my brain, resulting in 4 strokes.  It was also the cause of my fatigue due to living with low oxygen levels.

I was still in hospital after five days.  But, I was so lucky.  I was walking, if unsteadily, and I had no speech problems.  The worst symptom was the headache.  Two of my strokes were in the cerebellum, which apparently can reroute.  I work as a Nursing Assistant, so I was helping out with other patients.

It was a shock to realise that I’d been living all my life with a ticking time bomb in my lung.  As most PAVMs (pulmonary arteriovenous malformations) are caused by a genetic condition called hereditary hemorrhagic telangiectasia (HHT), and there could be possible implications for my family.  A couple of months later I went to London to see the top consultant in this area and was given more bad news.  My only treatment option was to have the PAVM surgically removed and I would lose a third of my right lung.  My condition had been deteriorating and I’d been put on supplemental oxygen, so the operation was booked in November 2018.  I was hoping for a keyhole procedure, but in the end it was an open thoracotomy.

Recovering from this surgery was a big challenge.  The pain was overwhelming, as was my reaction to the strong pain medication.  I was in hospital for a couple of weeks recovering.  A month after, I went cold turkey off the drugs and didn’t sleep for a week.  Since then, I’ve recovered really well.

I went back to work seven weeks after my operation and a month later I was full time.  My oxygen levels are normal, I’m off all meds and I’m now starting my nurse training – something I would not have been able to do before due to fatigue!

I had genetic testing and I do have HHT.  Now all of my family is being tested.  I am also having further tests as AVMs can be anywhere in the body.  But I feel well.  So in one way I’m glad that I had my strokes.  I’m so lucky that I have made a the recovery I have from them.  There are some lasting effects, like poor short term memory loss, and a different sensation down my left side.  I got my driving licence back but I got used to living without a vehicle, so I’d actually sold my car.

During all this I put my affairs in order.  My children have joint power of attorney.  We had the difficult conversations about funerals and organ donation.  I got rid of a lot of stuff.  It does feel good to have done this, and I would actually recommend it to anyone, healthy or not.  None of us knows what is around the corner, whatever our age may be.  I feel like I’m now on extra time.  I shouldn’t be here, but somehow, I am.  I try and enjoy each day.  Today I’m babysitting my wonderful three-year-old grandson.  Life post stroke and post-op is good.

Thank you DS for all your work.  If my story would help someone, please share it!