08 | THE DIAGNOSIS : CONFIRMED WHILE IN A COMA
FINDING OUT I HAVE PERM
I have no personal memory of the cardiac arrests or the days immediately following admission. I was kept in an induced coma through Christmas and was gradually brought out of it between Christmas Day and New Year’s Eve.
When I finally woke up in intensive care, a nurse gently said my name. She told me I had been very ill and that my wife was on her way. I lay there staring at the door, overwhelmed with relief when she walked in. At that moment I instinctively knew I was lucky to still be alive. All I wanted was to be with my family — the explanations could wait.
Over the next few days the full picture emerged. I learned I had suffered complete heart block with no heart function for 12 minutes and then 8 minutes. I had dropped to under 60kg, had a feeding tube and catheter, and was unable to move from my bed. I had developed severe kyphosis from the spinal fractures. While in the coma I had experienced delirium with vivid and sometimes terrifying dreams. On Boxing Day my oxygen saturation had fallen to 40%.
Coming out of the coma was incredibly emotional. My wife had brought The Boy, the Mole, the Fox and the Horse and had read it to me while I was unconscious. She and the children had opened Christmas presents beside my bed. Some of the lines that stayed with me were:
“One day you’ll look back and realise how hard it was and just how well you did”
“There were dark days but you didn’t give up”
“Are we lost then? No, said the fox, because we have each other”
Over the coming days I slowly began to research PERM. Getting a diagnosis of an incredibly rare, incurable autoimmune disease felt surreal. Knowing there was nothing that could reverse it left me feeling helpless at times. Yet from the moment I woke up I focused on what I could control. I started making tiny movements with my atrophied limbs, determined to rebuild strength and prepare for physiotherapy. I knew that if I became overwhelmed by the diagnosis I would limit my own recovery.
What I Would Say to Someone Now
When a diagnosis is confirmed while you are unconscious, you miss the moment it is delivered. Waking up to a rare, life-altering condition can feel surreal and overwhelming. It is normal for the emotional weight to hit later. Looking back, the speed with which the team acted on the positive glycine receptor antibody result probably saved my life. If you or a loved one ever face this situation, know that it is okay to ask for everything to be explained again once you are awake. Focusing on the small things you can control can help you keep going when the bigger picture feels too heavy.
Technical Note
PERM is diagnosed by the combination of clinical features and positive anti-glycine receptor antibodies. Treatment usually involves immunotherapy (e.g. steroids, IVIg or plasma exchange) plus symptomatic management with benzodiazepines and muscle relaxants. The leadless pacemaker was later fitted to protect against recurrent heart block. Delirium and profound hypoxaemia (oxygen saturation of 40%) are recognised complications in severe cases requiring intensive care.
