Living With A Congenital Heart Condition

Beginning with the beginning, does not present a realistic picture of me. So let me tell you about the person sitting tapping on an computer keyboard at this moment in time. I have been living in my own home for the past 18months. It has been 18 months of extremes. I moved out of my parents home with a huge 30th birthday party, to begin my own life, having just complete a Bachelor of Education at the Auckland College of Education. I threw myself into a freelance computer graphics job, both teaching and in industry, as a means of earning the money I would need to sustain a rather large mortgage. I worked during the day, designing brochures, posters, and packaging. I worked about 5hrs a day in this job. In the evenings I taught computer graphics to adult students and would get home at about 11pm each night. I was exhausted, but thriving. It was unfortunate that due to money worries within each company, both these jobs came to an end. However, despite my own money worries, this year has offered other challenges and excitements. I have plans to travel and met up with someone who is special to me. I have packed up my house, found a tenant, and I sit here with boxes surrounding me, bags to pack, and doctors to phone and visit. I have been absolutely exhausted this week.

Health wise the last 18 months have been the best in years. It is wonderful to feel capable. Although my health is good, I still need to be vigilant and sensible. With the upcoming travel, I need the doctors to confirm I am healthy enough to travel, and advise me on how to travel with a bag full of tablets, of specialised doctors in other countries, of how to regulate my INR, and how to get medical insurance to cover a congenital heart condition. I take 8 different tablets a day (12 in all) to keep my heart and body healthy and in working order. I need my INR checked monthly. I had a Pacemaker check yesterday and that seems to be functioning well - which I think I already knew, because the slightest misbeat of my heart can send fear into my bones. I am relieved that I am going to be traveling with my doctors consent and a relatively healthy heart.

It hasn¹t been this idyllic all my life. I was born with Tricuspid Atresia and was a blue baby. I did the bum shuffle, common to cynosis babies. I was first hospitalised 3 days after I was born, and diagnosed not long after. My medical family knew too much about what life might be like, and they chose the best country to live in for pediatric medical care at that time - New Zealand. Although I was hospitalised more than the average child, and underwent multiple surgeries, I tried to ignore/deny that I had a heart condition as much as I could - even as an adult. Ignoring a condition helped me to strive for the things that others thought would be too hard for me - and sometimes I surprised others and myself. But it also landed me in frustratingly unhelpful and sometimes dangerous situations.

In the past, by denying my condition, I had not taken medical advise seriously. Before my OE, in 1990, my doctors said I needed more surgery. As that spelt the end for me (in my mind), I decided to see the world first. I was fortunate to have family scattered around the world who took me in. I do not recommend that others ignore doctors advice, as within 6 months of traveling I was a walking time bomb and was headed for a stroke - though luck prevented that. I met up with long lost friends 8 months into my OE, who were so impressed with the weight I had gained - I had put on 8 kilos in 8 months. I wasn¹t to know that it was all fluid due to heart failure. I would run up and down stair wells in an effort of Œbump¹ my heart back into sinus (normal) rhythm.(also not recommended!!).Three days after arriving home from my Œheroic¹ OE in 1992, I was standing, near paralysed in a book store, with my heart racing at 240 beats per second. I was immediately hospitalised for my second open heart surgery. I begrudgingly accepted my fate.

When I survived my second heart op, at age 22yrs, I was mystified. I had lived - again. It was then I realised that I hadn¹t planned for a future. This was fairly dumb, as no one ever said that I would die young. However when you are born with Tricuspid Atresia and have already suffered from a brain abscess at the age of 7 yrs, you kind of assume some things about your life. I assumed that I would not live past 21 or any further surgery. When I did, I realised I had a career to think about, adulthood to deal with, and independence to gain. It all seemed rather overwhelming. However I did get a job in Desk-Top-Publishing as this was something I could do. I struggled for some years to come to terms with my Œimmortality¹ and then again my mortality - I was like a stereotypical teenager at the age of 23. Though I did not engage in activities that were overly rebellious, I certainly pushed my body harder than it should go and I was admitted to hospital a few times a year, mostly because I was non-compliant with my medication, and I suffered from long periods of arrhythmia's, for which I needed to have electro-cardio-version. It was always only luck that I had no blood clots or a stroke. And after a while, I wandered when the luck would end. The thing I remain most grateful about, is a loving family and understanding siblings. It did however irritate them when I did not tell them that I was unwell, and they would only find out at the bitter end, when I could not stand the arrhythmia's anymore. They then helped me make an appointment to see my doctor.

In the end, I did see a counsellor who helped me to plan for a future. With that help I enrolled in the Auckland College of Education in the first step towards a growing passion to work as a Hospital Play Specialist. I had worked as a volunteer one Christmas at Greenlane Hospital, alongside a play specialist. It had been difficult. The things I saw and heard took me back to my own childhood in hospital. An anger built up inside me about my memories - needles in the night, tablets forced down my throat, alone in a large ward with no friends, and people not understanding how I felt. A passion also grew while working at Greenlane. A passion to ensure that other children were listened to, their fears heard and their emotional needs met. At College I soaked up every book and article on the effects of hospitalisation on young children. I realised that my experiences were normal and that people had noticed and had taken the time to write about them, and change some procedures to ensure that children¹s emotional needs were met within the hospital environment. I found it incredibly fascinating and identified with almost all that was written on the subject. I was also able to recall some of the positive things about being in hospital. I have to say that the most useful thing I learnt as a child patient, was patience! This has helped me in the most exciting times and the most hard times. I realised that what I gained was the knowledge that my parents will always be there for me - and the long hours they spent by my bedside was the most comforting feeling I have ever had. And after many years I have also learnt how much my sisters sacrificed and am overwhelmed by their unconditional love - where many could have reacted in anger.

I never went to the local schools with my sisters. After my first heart surgery at the age of 7, just after my brain abscess, my parents thought long and hard about the best school for me - so I went to a smaller school and then on to a small private school when I reached intermediate. The hardest part of school was ofcause Physical Education. It was hard telling the teacher again, that I was too tired to continue. I was usually blue by this time, and in hind sight I only remember the teachers rolling their eyes and telling me to sit on the side lines. Without outward signs of a Œdisability¹, I just felt Œdifferent¹ and spoiled when told to run around half the netball court or field, while the rest of the class complained about running all the way around. I always wished I could run with the others. My close friends understood and we could laugh about it. On cross country runs they would all offer to escort me so that they would not have to try too hard - but I think they were always surprised at HOW slow I did run. It was unfortunate that in high school, life circumstances were such that I had to move country and begin at a large local high school. Here I took advantage of my condition being Œinvisible¹ and told only my closest friends. So during swimming classes, which I eventually had to give up, it was embarrassing sitting on the side line with others wandering what was wrong with me. I was accused by one boy of being on drugs, because I was so slow with everything I did, and withdrawn. This wasn¹t true, but I let him believe it - it was better than admitting a heart condition and growing depression.

I would like to say that there were some great things about school - but I have learnt as an adult that school was not a great place for a lot of people. So again I find some normalcy about me - and that is encouraging. It was really tertiary education that helped me find the best of me, helped me pull my good resources and achieve things I never thought I could. They said College would be hard work for me - and my third heart surgery in the middle of it certainly looked like it would take me out of my new found passion. Instead it made me more determined. I ensured that my third surgery - ŒModified TCPC Fontan¹ was performed during the first Christmas holiday break. It was a decision left to me, and a huge decision that I had never had to make before. It was apparently my most difficult surgery yet. But again with a loving family right beside me, letting me make the decisions, and holding my hand through it, we all made it through. I took the time to learn more about my family and how my health affected them - and I was humbled at what I heard. I firmly believe that it has always been easier for me to undergo heart surgery, than for my family to stand by and watch and wait. I never want to be in their shoes.

I did not miss a beat of College, and that is probably thanx to the Pacemaker I fought so hard not to have. Thank you Dr Calder for your gentle persuasion. I confess that I still only told a handful of friends at College and I told them because for 2 months after surgery I would cringe everytime the ventricular wire from my pacemaker fired a shot - a fault in the wire caused a small electrical shock thru my torso. A computer at home enabled me to work when I could, and not always when I had to (thanks Dad). My Mother took great care of me for the first few months following surgery and assimilating myself back into College. She did things for me that no mother should have to do for their grown up daughter. (thanks Mum). And then to watch my sister go back to University to study for her second degree despite the odds she faced, and aim for a top job, was a great example to follow (thanks Rach.)

This third surgery, now 3yrs ago, was most successful in the long run. Though it took some time to recover, more emotionally and mentally (I have an appalling memory now) than physically, I now feel - at the age of 32 - the best I have ever felt. I still need help cleaning my house, doing some of the garden, and cooking meals when I am really tired - but I can ride a bike along Mission Bay, walk around town for up to 2hrs, pull washing lines poles from my garden (though not recommended) and live with a large amount of independence. I have learnt that being compliant with medication is all GOOD, and that talking with the doctors about any concerns and questions is helpful - not only when I am ill, but also in understanding my condition and abilities. I have also learnt it is ok to ask for help, and it is also ok to try some things myself. It is ok to tell people about my condition and when I do, I am amazed to hear other stories of struggles and triumphs. I have found friends who understand my life as they have been through similar experiences. I have learnt that some have harder times and others have easier times, but we have all had our fair share of special times when we look for them. I recognize that I am writing this at a time where I am well and am looking forward to some good times - though I know there will be some bad ones as well. I don¹t think I can ever forget the hard times - but my aim in life now is to look forward to life - and whatever I meet along the way I will deal with when it happens, with friends and family. This is my aim, and although I will sometimes forget this along the way, I hope that by writing my story, I too will be reminded.

This has been the single webpage version of my life. It is so much more than this. Along with having a wonderful cat; delighting in learning to look after a garden; looking for a job; using my artistic talents and a gift from my sister in the UK (thanks Annette) to earn money (see www.kdesign.co.nz); having wonderful nieces and enjoying the frequent company of my nephew; other family members¹ lives, achievements and struggles; great friends; meals out; birthday picnics; photography; and looking for and experiencing love.