Royal Melbourne Genetics 30th AuguSt 2017
Following conversations with my specialist, we organised to pursue genetic testing. In March 2017 my family traveled to the genetics clinic at Royal Melbourne hospital for the test. Simple enough. Just a vile of blood.
Five months go past and the day finally arrives that will deliver the results. I hadn't thought too much about it over the five months. Most people I spoke to where pretty sure nothing would be found as it hadn't presented as anything that matched a known condition. Unfortunately the clinic nurse had called the week before to try to change the appointment time and when it was sorted, she called back and said original appointment time stood as my results were complicated and needed their full team to explain it. This of course was met with with high anxiety and stress. I couldn't finish the week at work and spent nearly a whole day in bed enveloped in depression assuming the worst. My family did their best to distract me over the weekend and I did ok .
But the Wednesday rolled around and my husband and I went to the appointment. I felt nervous, sick and scared it was something awful. We were very early but luckily the doctors were ready and we got called in.
I had the clinic director, a genetics counsellor and a placement student in the room and they straight away informed me that my cardiac arrest was due to a genetic condition called AVRC or Arrhythmogenic right ventricular cardiomyopathy. It is a genetic condition that causes the replacement of cardiac muscle with fibrous, fatty tissue. It affects mainly the right ventricle. The chief significance of AVRC is that it can produce potentially dangerous cardiac arrhythmias.
I took that news ok on reflection. They had discovered the reason why my heart had stopped. It wasn't some complete freak of nature, but rather a genetic condition that can take a long time to present. The wall of tears came though when I suddenly realised if it's genetic, what have I done to my son? I cried from fear of whether this condition will kill me and what if Henry has to go through this. The genetic counsellor tried to understand and ask questions to see where my head was. By the end of the meeting I had calmed down and could face people. As it turned out, we ran into the surgeon that did the ablasions on me and he was surprised to learn of my diagnosis but happy things were going ok. We went to lunch and sat reasonably quietly before going home. The wave of depression hit that night. I cried from 18 months of panic, worry, fear, despair and anger. I was so angry. Why in the hell did this happen to me? What did I do? This is a train of thought that I have to continue to work through with my psychologist. I am still so scared that he has the gene. And my brother? My parents and my brother are getting tested late October and maybe that will reveal which side of the family it comes from or whether it has started in me.
Unfortunately I woke the next day in a seriously heavy cloud of depression. I took my son to his carer and went back to bed. I didn't get up all day. I was physically and emotionally exhausted . Every emotion went through me. By the time the time of day came that I picked up my son, I could feel the depression had lifted a bit and I could face the world. I didn't feel back to my usual self until the Saturday morning.
Now a few weeks after the appointment, I have many questions for my cardiologist appointment in November. Emotionally, I go from up to down and find myself thinking about life and how bloody unfair it can be. But on the other hand, how lucky we are to live in a country where health care is at your fingertips.
Sometimes I celebrate my survival and sometimes I get angry. Recovery goes on....
Five months go past and the day finally arrives that will deliver the results. I hadn't thought too much about it over the five months. Most people I spoke to where pretty sure nothing would be found as it hadn't presented as anything that matched a known condition. Unfortunately the clinic nurse had called the week before to try to change the appointment time and when it was sorted, she called back and said original appointment time stood as my results were complicated and needed their full team to explain it. This of course was met with with high anxiety and stress. I couldn't finish the week at work and spent nearly a whole day in bed enveloped in depression assuming the worst. My family did their best to distract me over the weekend and I did ok .
But the Wednesday rolled around and my husband and I went to the appointment. I felt nervous, sick and scared it was something awful. We were very early but luckily the doctors were ready and we got called in.
I had the clinic director, a genetics counsellor and a placement student in the room and they straight away informed me that my cardiac arrest was due to a genetic condition called AVRC or Arrhythmogenic right ventricular cardiomyopathy. It is a genetic condition that causes the replacement of cardiac muscle with fibrous, fatty tissue. It affects mainly the right ventricle. The chief significance of AVRC is that it can produce potentially dangerous cardiac arrhythmias.
I took that news ok on reflection. They had discovered the reason why my heart had stopped. It wasn't some complete freak of nature, but rather a genetic condition that can take a long time to present. The wall of tears came though when I suddenly realised if it's genetic, what have I done to my son? I cried from fear of whether this condition will kill me and what if Henry has to go through this. The genetic counsellor tried to understand and ask questions to see where my head was. By the end of the meeting I had calmed down and could face people. As it turned out, we ran into the surgeon that did the ablasions on me and he was surprised to learn of my diagnosis but happy things were going ok. We went to lunch and sat reasonably quietly before going home. The wave of depression hit that night. I cried from 18 months of panic, worry, fear, despair and anger. I was so angry. Why in the hell did this happen to me? What did I do? This is a train of thought that I have to continue to work through with my psychologist. I am still so scared that he has the gene. And my brother? My parents and my brother are getting tested late October and maybe that will reveal which side of the family it comes from or whether it has started in me.
Unfortunately I woke the next day in a seriously heavy cloud of depression. I took my son to his carer and went back to bed. I didn't get up all day. I was physically and emotionally exhausted . Every emotion went through me. By the time the time of day came that I picked up my son, I could feel the depression had lifted a bit and I could face the world. I didn't feel back to my usual self until the Saturday morning.
Now a few weeks after the appointment, I have many questions for my cardiologist appointment in November. Emotionally, I go from up to down and find myself thinking about life and how bloody unfair it can be. But on the other hand, how lucky we are to live in a country where health care is at your fingertips.
Sometimes I celebrate my survival and sometimes I get angry. Recovery goes on....