On Friday I will become the bionic woman. Well, a bionic woman. A bionic person. I’m getting an Implantable Cardioverter Defibrillator (ICD). Over 3000 implantation procedures are performed in Australia each year, mainly in men aged over 70, so being a female under 40 it is slightly unusual.
I have been living with the knowledge of my heart condition for eight months. The majority of this was I was under the impression I had a mild, mainly inert version of cardiomyopathy. I wore a 24 hour holter monitor in November last year and had a follow up appointment with my then cardiologist in December. I attended the appointment and had been waiting for over an hour at 6pm on a Friday night and was informed by the receptionist, when I asked, that it was conceivably another two hour wait and so I left and said for her to contact me if anything pertinent had arisen on the monitor that I needed to be aware of. I duly made an appointment for six months time and left. I was exhausted and went home to sleep.
I received a follow up letter two months later stating that episodes of ventricular tachycardia (VT) were evident. I googled this and immediately organised a referral to my dad’s cardiologist, Professor Prash Sanders of the Cardiovascular Centre. VT is a major indicator of sudden cardiac death. The day after receiving my referral my new cardiologists office called and arranged an appointment. SInce that appointment only four weeks ago I have had a four day holter monitor, an angiogram, cardiac biopsy and will be receiving my paramedic on demand in three days. I have also had a preliminary test for an extremely rare genetic disease which affects maybe 10 000 people in the world.
It’s been a whirlwind and my mind is in chaos. Google has been a relief and a terror. The more I read about the medical benefit scheme and private health insurance gaps the less I actually understand. I’ve always felt that I was bone idle but now that I’m not allowed to do anything (Prash doesn’t want me getting my heart rate above 120 and my family won’t let me do anything that requires any exertion at all), I feel an utter frustration and uselessness like I’ve never before felt. Though I do allow myself the gallows humour fantasy of imagining my loved ones having to explain my passing due to the exertion of emptying the dishwasher and people exclaiming that they would never have imagined that particular circumstance happening to me.
You do have to keep your sense of humour. My first appointment with Prash I commented on consulting with his colleague Dr Google and finding this incredibly rare disease and being able to attribute multiple symptoms. His rolling his eyes but not laughing me out of his office was both reassuring and alarming in equal measure. I told my friend that my husband won’t touch me at the moment because he’s worried about my blood pressure getting too high. I replied that it hasn’t been a problem in the past, why worry now? Boom Boom.
I’m looking forward to having the ICD put in. I’m aware that there are potential side effects and that it’s componentry will need to be replaced over time, but living with constant low level paranoia as I have for the past month has been harrowing. I’m hoping that reaching this milestone will alleviate my immediate concerns. I need to reconcile the fact that I have lifetime of health concerns to come, the severity and progression of which are not completely within my control. I also hope it will provide some reassurance to my loved ones. I commented to my mother on my concerns for my husband and his stoicism. She remarked that it’s hard being the one that has to watch. This breaks my heart. Figuratively of course, literally it merely beats irregulaly and is oblivious to everyones concern. (There’s that humour I referred to earlier.)
As a side note, Sudden cardiac arrest is one of Australia’s biggest causes of death and disability. It claims the lives of an estimated 22,000 to 33,000 Australians each year. (See here http://www.heartregistry.org.au/2013/02/cardiac-arrest-heart-attack/ for more details.) It is different to a heart attack as that is caused by a blocked artery. It’s the electrics as opposed to the plumbing if you will allow me the analogy. If you would like to donate to further research in this area, and in particular to Professor Prash Sanders team at the University of Adelaide please go to the web page http://www.adelaide.edu.au/chrd/impact/