Kylie Chappell celebrates 20 years
My story begins 1 April 1978 at 6:27am. This was the moment I was born, and this was the start of my journey. I was born at 2.22kg (4lb 14_ oz in the old scale). Mum thinks she was duped as it was only 3_ hours between her waters breaking and my being born, with only the last 10 minutes actually having any labour pains. Other women would disagree and say she was blessed. Anyhow, although I was only 8 days premature, I was considered 2 months premature due to my size. I had trouble feeding because of facial bruising due to being born face first instead of crown first, but my heart problems were not picked up until I was about 2 months old.
Initially it was believed that the valves of my heart were pumping in the wrong direction, and I would need to be sent to Sydney as there were no surgeons in Melbourne able to perform the specialised operation required. In October they discovered why my medical behaviour was so erratic - I had multiple holes between ventricles of my heart, and this was increasing the load on my pulmonary artery, enlarging it, and the enlarged pulmonary artery was cutting off my trachea and stopping me from breathing. These findings led to the first of what would be a total of 3 open heart surgeries prior to transplant. On 28 October 1978 this operation took place at the Royal Children's Hospital, with the banding of the pulmonary artery (to constrict it and stop it from affecting the trachea), and a patch on the multiple VSD (due to this, in medical circles I became known as the 'Swiss cheese kid' - owing to the ventricular septum resembling Swiss cheese).
Mum was told I would not need any more surgery for approximately 2 years, but every test they performed, always showed that I was doing extremely well, and it was not until 15 August 1986, almost 8 years later, that another patch was done as well as the removal of the banding on the pulmonary artery. As the band had been constrictive, and I had grown, the band itself had caused damage, almost severing the pulmonary artery. It is believed that this damage to my heart contributed to my need for transplant.
October 1988 was my third and final open heart surgery, with another patch as well as trying to fix other problems that had arisen, mainly tricuspid incompetence. It was during this admission that I met Michael Sofoulis, the first successful paediatric heart transplant recipient operated on through the Royal Children's Hospital. A very special person, a pioneer, and someone who I miss dearly.
Then in August 1991, I was admitted to hospital due to fluid retention and atrial fibrillation. They shocked my heart back into rhythm, only for it to go out again a week later. It was at this time that they officially diagnosed me with Cardiomyopathy and congestive heart failure, added another two medicines to my regimen, and sent me home, coming back into hospital only for tests to assess for transplant, as to whether I was suitable, and also whether my body could cope with just the heart transplant, as up until then all females transplanted at the RCH (which wasn't many) were all heart-lung.
On 11 November 1991, I received my pager that would give us the message if a suitable donor organ became available. I was re-admitted on 20 December needing fluid restriction and protein loss, and discharged on Christmas Eve with a large toy stuffed dog.
My cousin was born early January 1992, and my family all bundled in the car to make the journey to Frankston to visit. The first time we had ventured so far from home after being put on the list, and of course it had to be the day that I received my call. We were actually on our way home, and had stopped in to see a cousin's friend in Seaford, when I heard the pager go off in Mum's handbag. I believe I literally jumped over the kitchen chair, grabbed the pager, and jumped back, before anyone even knew what was going on. The pager wouldn't give us a phone number like we were told, and when we rang Telecom (I believe it was Telecom then!), they told us we needed to have a password. So Mum hung up and rang my transplant co-ordinator directly, who told us that there was a donor organ available, and the team were on their way to retrieve it, so we had a few hours up our sleeves.
We went home, got my things, made a few phone calls to family members to let them know what was going on, and then headed to the hospital. We had been told to go straight to ICU, where an isolation unit would be waiting. Apparently I RAN down the corridor of the ICU to announce that I had arrived - to look at me you wouldn't know that I was so ill, as my body had coped so well with illness all my life. I also wanted to walk into theatre, which I did, and THAT I remember to this day.
I went into surgery at 1.30am, and my family didn't see me again until 8.30am. I was in ICU for five days, and home (which was only 15 minutes from the hospital) in 2 weeks. Back to high school in 3 months. And very few complications, including 2 minor bouts of (suspected) rejection, which is a blessing. I also believe that my faith in God has pulled me through some times in my journey that otherwise I might not have seen a way of getting through.
I look back on all I have been able to achieve - completed my VCE, completed a Dual Diploma TAFE course in Science, held down a full-time job at Melbourne University, got married and all the lives I have been able to enrich all because of one family's selfless act of generosity.
This year, I have celebrated my 20th Anniversary of my transplant. There is not a day that goes by that I do not remember and give thanks for my donor family. Their decision in such a time of grief is the ultimate gift, and for this I will be truly and forever grateful.
I am living proof that it works!
