Derek Baas, born with Tetralogy of Fallot

Last year I wrote: As my heart disease evolves over time, so will the mental health issues associated with it. New issues will make themselves known and old ones will likely pop back to mind from time to time. Thus my ability to live and thrive with CHD will continue to be a function of practicing agency and developing capacity around all aspects of my health.

To this I would add: Progress with respect to mental health is definitely not linear. Earlier this year, I felt I’d gone back to square one and that all of my experience, knowledge and hard work had been for nothing. It wasn’t true though, because the amount of time it took to start bouncing back from this very low point, was considerably less than it was in the first instance (months vs. years.) Having good coping skills and support doesn’t necessarily mean you will never fall – it can simply mean being better at getting back up when you do.  

Starting in November 2022, I experienced a cluster of ventricular tachycardia episodes. These were unnerving, particularly when it became clear that they were not one-off incidents. My mental health worsened further in late January 2023. I started to feel light-headed and sensed the tell-tale racing of my heart. Next thing I knew, my wife was standing over me as I lay with my head on my bed and my knees on the floor.  I had lost consciousness from a cardiac event for the first time ever and had received a full-on shock from my implanted defibrillator for the first time since 2001.     

I immediately found myself snapped back to my head space of 1993-94 when major implications of my CHD presented themselves for the first time in my adult life.  I started having frequent episodes of racing heart, I knew that something was terribly wrong, but nobody could figure out what. I became anxious, hesitant, and afraid of doing anything that might set off one of these mystery spells. I felt and acted a shadow of my former self (I was finally diagnosed with life-threatening VT in March 1994 and received my first ICD later that year). These problems slowly abated – with many ups and downs along the way – over the course of several years.   

This January, I knew what I was dealing with and had almost 30 years of experience with arrythmia and a bevy of coping skills under my belt, but none of that mattered. The pass into uncharted territory of actually losing consciousness cut through all that. In my mind, I was 28 years old again, surprised, confused, hypervigilant and afraid of my own shadow. It felt like a complete regression and was very frustrating.

However, over the course of the next couple of months, I started to regain some confidence. Once the episodes stopped (largely owing to new a medication), I was able to calm down a little, draw upon the support of family and friends and deploy some of the strategies that had helped me in the past. Five months after the fateful day and four weeks after a very intense ablation procedure (my second), I am still somewhat mentally shaky. But it has only been five months.  In the 1990s it took me about 3 years to get to this stage from a very similar starting point.