Bionic Woman

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/

Tired

I was tired today.

I’m not happy with the state of my health. Unfortunately, there’s not a lot I can do about it. The cardiomyopathy will limit my wellbeing and the fatigue will be something I will have to deal with.

My doctor today said that I’m probably stressed and am I feeling down. No, I’m not. I’ve got a history with anxiety and depression and have been on medication for it for over fifteen years. I like to think that I’m pretty self aware in that regard. Since I’ve gotten over a dreadful couple of months of colds and never ending flus I’ve actually been pretty productive and positve.

To be honest, I’m a little bit over depression or stress being the first cause that anyone thinks of.

But there’s the rub, as soon as it’s mentioned, the innately anxious and self critical part of me starts prodding in my mind. “Hey yeah, maybe you are a hypochondriac. No one gets as tired as you, you don’t even do that much.”

My doctor tried to reassure me today by saying “You shouldn’t worry because your heart’s not that bad.” I know it’s not that bad, when compared to people requiring heart transplants, but to me it’s a concern. Not an overwhelming one. I know that I don’t think I have a greater chance of dropping dead today just because I have a diagnosis. Mortality is still something I ponder probably more than I should. Hey, I’m a thinker, I think about a lot of things more than I should. I don’t think I’m more stressed since the diagnosis.

I feel happier than ever.

My body now just gets tired. I need to rest.

Welcome to my first post

I’m Jessica. Hi. I’m married and we have two daughters. I work part time at a bank. I will be turning the big 4-0 in 2015.
That’s the bare bones. To be honest as my mid thirties turned into my late thirties I started to become reflective . I remember that turning 30 was not a big deal. I had achieved all the goals I had wanted to in my twenties. I had lived overseas, bought a house, got married and had a child. I began a mental checklist of my achievements of this fourth decade of my life. A second child, built a house, found a decent job.
It didn’t feel quite as accomplished as the previous. Upon reflection I felt like I was on autopilot. All the ducks were in a row and I didn’t need to do anything to drastic to keep them in line. I felt creatively unfulfilled. I also felt dumber than I did twenty years ago; like I switched off my brain when I finished high school and was too busy to learn anything new. Two discoveries and one knock-me-on-my-arse diagnosis have changed the course of my life.
The first was brought about by my indecision in having my second daughter baptised. My husband has been an atheist since his teens and went along with the first ceremony in the vein of similar men through millennia, keep the sleep deprived and lactating missus happy. For some reason, however, I couldn’t commit to the second. It didn’t feel right. Then a friend linked an obituary for Christopher Hitchens on facebook. I clicked and then found hundreds of hours worth of ethical debates on youtube. The day I decided and said out loud that I am an atheist was edifying. I am released from the burden of indecision. I am a humanist and this now colours all of my decision making and I feel more in tune with the planet and my fellow creatures on it. It makes me happy.
The second was discovering fan fiction. People that know me, know that I love the Harry Potter series. Really love it; like read books one through seven in succession nine times in a row. So anyway, I was stumbling through the internet and discovered a fanfiction site. Where had it been all my life. The world and characters I love with new imaginings, new plots, new pairings. Erotica, yikes. Stay with me here, people write the stories with the characters aged, it’s not weird. This discovery has opened me to the possibility of accessing my own creativity. How wonderful to create a fictional world that could inspire other talented creatives to inhabit it and expand it. I undertook a short writing course at TAFE this year and was pleased with the encouraging feedback from the lecturer, even if my grammar and punctuation is deplorable. The most important lesson I learnt was about behaviours; having a regular place and time to write and making it part of my routine. Unfortunately, I am very lazy and this will need to be overcome. Hopefully having this blog can help me.
Finally, a month ago I was diagnosed with a genetic and chronic heart condition called Hypertrophic Cardiomyopathy (HCM). A long name, too long when you are constantly typing it in google. This illness is an explanation for my near constant fatigue and inability to do more than basic chores without my chest tightening and and my breath becoming laboured. I thought I was just unfit. The general overview of this disease is, the cells in my heart have become disarrayed and caused part of the front wall to enlarge and thicken. My heart has to work harder to pump blood through my body. Fortunately for me I don’t drink alcohol or smoke so haven’t had the stress of withdrawals. Ironically the worst instance with drugs I’ve had is caffeine. I gave it up cold turkey about two months ago and was feeling fine but then decided to have a coffee for old times sake a couple of weeks ago. Have you ever heard of caffeine intoxication? Neither had I. I had to be driven home from work because my arms were shaking and twitching so much. Even though it’s out of my control to prevent the progress of the disease (it may or may not get worse), I’m now on a health kick and hoping that I can do everything I can to prevent the symptoms of the disease.
So that’s me.
My goals with this blog is to express myself and make commentary on subjects that interest me, to practise my writing and to connect with other people in the HCM community. Fingers crossed that lazy thing doesn’t crop up too often.