My story begins April 1st 1978 at 6:27am 

this was the moment I was born and this was the start of my journey.

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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.

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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.

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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.

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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.

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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.

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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.

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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 .

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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.

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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.

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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.

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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!

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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.

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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.

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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.

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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 

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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.

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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.

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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.

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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.

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Kylie Ann Chappell

xoxox

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The Shaun Miller Foundation

AMBASSADOR

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