Kylie Ann Chappell
The Shaun Miller Foundation
My story begins April 1st 1978 at 6:27am
this was the moment I was born and this was the start of my journey.
My birth weight was 2.22kg,or 4lb 14½ oz in the old scale
Mum thinks she was duped as it was only 3½ 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, 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 specialized operation required.
In October they discovered why my medical behavior 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 pressing on my trachea
stopping me from breathing.
There were many times in that first stage's of my life
where it was thought I would not survive
so I was baptized as a baby while still an inpatient of the hospital
and there were many late night runs to the Emergency Department.
There was even a night where the police came to collect my family
from home and give them a police escort to the hospital
as it was feared that I would pass away that very night
I dread to think the stress that all this was on my family
a constantly sick child that you didn’t know if they were going
to live from one day to the next.
The findings of my heart issues led to the first
of what would be a total of 3 open heart surgeries
prior to transplant which, in the scheme of things
is very few surgeries for a Heart Kid.
The operation took place on October 28th 1978
at the Queen Victoria Hospital Melbourne
with the banding of the pulmonary artery
(to constrict it and stop it from affecting my 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.
Looking back now the banding helped at the time, stopping the enlarged
pulmonary artery from cutting off my breathing
but now I realize that it also prevented the high pressure blood flow
into my lungs that could have lead to pulmonary hypertension
resulting in a transplant being required earlier in my life
and it needing to be a heart-lung transplant
which were not overly successful in the early days of transplantation.
Mum was told I would not need any more surgery
for approximately two years and every test they performed
always showed that I was doing extremely well .
It was not until August 15th 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 and it had caused damage to the artery
almost severing it.
It is my belief believed that this damage to my heart contributed to
but was not the sole cause of, my need for transplant
without it, I most certainly would have required
a heart lung transplant, as I stated before – I suppose this is the lesser of the two evils.
October 1988 was my third and final open heart surgery
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 pediatric heart transplant recipient
operated on through the Royal Children’s Hospital
a very special person, a pioneer, and someone 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 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 November 11th 1991, I received my pager that would give us the message
if a suitable donor organ became available
and I was readmitted on December 20th
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
it was first time we had ventured so far from home after being put on the list
the previous November and of course it just had to be the day
that I received my call! . . . talk about Murphy’s Law!
We were actually on our way home
and had stopped in to see a cousin’s friend in Seaford
it was about 7pm when I heard the pager go off in my Mother’s handbag
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 as we were originally instructed it would
and when we rang Telecom (I believe it was Telecom then!)
they told us we needed to have a password
so my Mother 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 grace.
We went home and got my things, made a few phone calls to family members
to let them know what was going on and headed straight into the hospital
arriving by about 8:15pm and directed to go straight to ICU
where an isolation unit had been arranged.
I RAN down the corridor of the ICU to announce that I had arrived
to look at me you wouldn’t have known that I was so ill
as my body had coped so with illness all my life
I went into surgery at 1:30am January 10th 1992
all being well, I had been determined to walk into that operating theatre
which I did and THAT I remember to this day.
My family didn’t see me again until 10:00am the next morning
which, for such a complex operation was a relatively short length of time
I was in ICU for five days, and home in 2 weeks
mainly because home was only a 15 minute drive from the hospital
which meant, I would be in close proximity if any problems arose.
I was back at high school in 3 months and I had 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 though
I became a Christian in 1996 and this coupled with my outlook on life
because of the transplant has, I believe,
helped me to maintain a positive outlook even when things do go wrong
especially to not stress about things unnecessarily
where stress alone can affect the medications and their effects.
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 around me enriched
all because of one family’s selfless act of generosity.
Last week, I was blessed to celebrate my 25th Heart Transplant Anniversary
my Silver Anniversary, there is not a day that goes by
that I do not remember and give thanks for my donor family
the transplant story, the journey, always begins
with the selfless choice of a grieving family
for without them, there would be no transplant
and no second chance at life.
Their decision in such a time of grief is the ultimate gift
and for this I will be truly and forever grateful.
That is not to say that I do not have my down days and rough patches
but I know that I am never alone
whether it be my husband, my family, my friends, or even the cat
there is always something or someone around me
that will cause me to smile and to remember
how and why I am still here.
I hope I am making my donor and their family proud
and now as an Ambassador with the wonderful Shaun Miller Foundation
I hope to continue to be a hope and inspiration
to all of those around me for many years to come.
Kylie Ann Chappell
The Shaun Miller Foundation