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Hello. My name is Nick Williams. I am 25 years old, I live with my Father

for me turning 25 or any age is a massive milestone in my life, here is why . . .

 

Diagnosed with Multicystic Bilateral Renal Dysplasia before I was born, at the Women’s and Children’s Hospital in Adelaide, I was only given 3 days to live. However through the hard work

of the Doctors, and my father, I have passed that milestone many times over. As a baby I was on special formula which was low in protein and high in calories and fats. Because of this special diet

I was able to survive without dialysis until I was 10 months old. Going through Hemodialysis, followed by Peritoneal Dialysis and Hemodialysis once more I went through around 20, or more operations, which ended with a Kidney Transplant when I was 5 years old. Because the doctors

at the time thought that I would not be able to survive much longer on Hemodialysis the Kidney Transplant became urgent. My father then went through the process of becoming a

Living Organ Donor and donated one of his Kidneys to me.

 

The pressure of the work up to the Kidney Transplant took its toll on my parents and before I got my Transplant they separated and I ended up living with my Father. After the Transplant things went well for the next few years with only one minor rejection issue early on, and Dad and I ended up moving to Bendigo in Victoria with my new Mum Vivienne. However the good times did not last and in 2005 Vivienne passed away and Dad and I were living alone again. the move to Victoria meant a change of hospital to The Royal Children’s Hospital in Melbourne and it was here that I first met Shaun Miller. At the time I had just been admitted to the Hospital in Melbourne and my dad had to travel back

to Bendigo overnight to collect clean clothes and I was by myself in the Hospital Ward. Shaun,

and his Dad Cameron, befriended me and we became good friends over the next few weeks.

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So this is how I met Shaun, I was in RCH (Royal Children’s Hospital, Melbourne) awaiting surgery and I was very sad/ nervous you could say for this. I looked up at this point and saw a bubbly face opposite my bed across the room.... It was Shaun Miller himself, his first words were "Hi bud, I'm Shaun" from them words we clicked right away and he comforted me with his AWESOME smile and told me "Don't worry buddy, I have been in your shoes before, you WILL be fine. Trust me" From this exact moment, we became close mates, best mates in fact. Once the surgery came around.

The Anaesthetists came and wheeled me away, Shaun popped up and said "See you when you come back from your surgery”.... Once the surgery was done, Shaun was in the ward and said

"See told you mate you will be fine”.... From here on for about 6-7 years, we did EVERYTHING together, going places, staying each others place, Playing Xbox, Watching the sports we loved, endless take away night from a kebab shop. But now Shaun has sadly passed away, and when this happened, a bit inside of me died when I lost my best mate. But to this day I and ALWAYS will miss him. I'm so grateful to still be speaking to Cameron; Like Shaun was my rock, Cameron is my rock.

 

I went to school as often as much as my health would allow and in 2007 my health started to

go down hill when I picked up a Bladder Infection. My Kidney Function began to fail at this point

and in 2009 Dad and I moved to Melbourne to be closer to the Royal Children’s Hospital.

This move came less than a month before I was once more on Peritoneal Dialysis, this time

Dad and I were trained to do Home Peritoneal Dialysis instead of doing this at the Hospital.

My health was unstable for the next few years and it did not help that in that time several

of my friends passed away including Shaun, who by that time was my best friend.

I eventually transitioned from the Royal Children’s Hospital to the Royal Melbourne Hospital

and also from Peritoneal Dialysis to Hemodialysis, and after a few weeks of training I ended up

on Home Hemodialysis. My day said the hardest part of learning how to do Hemodialysis was learning how to insert the Hemodialysis Needles. After a total of seven years on Dialysis,

both Hemo and Peritoneal, I finally had a Kidney Transplant in February 2016.

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You would think that this would be the end of my problems and the start of a new life, well I did,

but I was disappointed when my health problems continued. While the problems I struggled

with before the Transplant had gone I had a whole new set of problems to cope with including Rejection Issues. This resulted in a series of Plasma Exchanges and a treatment called IVIG,

I ended up having 2 rounds of both of those. The side effects of the Plasma Exchanges left me drained and lethargic and the Side Effects of the IVIG treatment caused me to have some bad reactions and the worst reaction caused me to need a Blood Transfusion. Unfortunately because

of my size my Mycophenoolate Level built up to high and this limited the Production of Red Blood Cells, that with the IVIG treatment reduced my Hemoglobin Levels to less than 30

andI needed three Blood Transfusions to bring the Hemoglobin Levels back towards normal.

Life was tough with that and the IVIG treatments but after a few months of treatment

my life seemed to settle down and become more normal.

For a few years I had lived a relatively normal life before the next round of troubles started, and when it started the problem showed up in My Blood Tests before it started to effect me. The most obvious sign was that my Creatine Level jumped to ----- and I was lethargic and was falling asleep early

and sleeping in late. After more blood tests and a Biopsy of my Transplant I had to start another round of Plasma Exchange and IVIG treatments. At first there was 10 Plasma Exchanges, 3 a week for just over 3 weeks and a week off before it was followed by 3 IVIG Treatments. Each IVIG Treatment was done in two parts and if that was not bad enough Melbourne went into Lockdown

due to COVID-19 and where my dad was with me for the Plasma Exchanges he could not longer stay in the Hospital with me and I went through these treatments with no support. Ten more Plasma Exchanges followed with the same regularity as the first then and then another 3 IVIG, though

you could really say it was six. While this brought the Rejection issues under control

it did not end them. I still have to undergo more IVIG Treatments,

each done in two parts on two days and repeated every month for another six months.

 

But now after the first 6 months of treatment the Rejection issues are under control, even though

I am still undergoing treatment I am mostly healthy and while my health is improving so I can live

a 'fairly' normal life, I also want to help others and by that I mean working for the Shaun Miller Foundation, so I can do my part and help cure (CHD) Chronic Heart Disease so no one else

will be lost to CHD the way my best friend, Shaun Miller, was.

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So the start of my life has been quite tough to say the least! So I am now 25 years old although

I have been though so much in so little time, I have been able participate in some so call ‘normal’ activities. I attended Kidney Kids camp for almost 5 years, and I absolutely loved it! It was such

an amazing way to meet young people, with similar conditions as you. You got to share similar experiences and stories with each other. It was a wonderful way to meet such amazing,

inspiring young and older people who can relate to you health wise. . I love spending time

with my friends and family, playing sport (AFL and Cricket) and watching WWE

(World Wrestling Entertainment) just like Shaun and I used to.

In fact I mention AFL, It was roughly in 2017 I was introduced to a disability sporting group (Reclink) this is where they do all types of sport and other programs. I found this group through a mate of mine who was already apart of it for a number of years, he asked if I wanted to play any sport apart from the cricket club I was playing along side him at. He then brought me to this Reclink program where I met Wynbay Bulldogs in their football program, here I was introduced with open arms to the coach and players and fitted right in and before too long I was registered and ready to train and play for the upcoming season. This league is like no other I had seen before, this league had people with all sorts of disabilities from learning, hardship and a whole range of things. This league I found out that if you have a medical condition of any sort you have to wear a vest when playing, this vest prevents you from being tackled, I thought "this is wonderful, what a way to include everyone" .. I was a bit rusty considering I hadn't played proper footy since junior days, and what a perfect way to come back into it. I have now spent the past 4-5 seasons there, and won 3 premierships, but even if you don't win, each player and team get a medal as it's all about inclusion.

Fresh off a premiership cup feeling and wrapping up the footy season, it was then early January I thought whats something I can now achieve on my bucket list, and it came to me. January 23rd 2018, this is the day I got my learners permit to drive, what a perfect present for Shaun knowing he would be looking down on me with that beaming smile on his special day. I also got to achieve a few things through this year which i hadn't been able to do due to health commitments (dialysis) in previous years, so 2018 was basically a breakout year, some things I got to achieve was ... Getting my learners permit, flying interstate (Sydney), staying there for a few days with Cameron, I was able to go to a few local bands, sporting events including the WWE Super Showdown at the MCG.

In 2019 I was introduced to a disability football league (FIDA) (Football Integration Development Association) which trains once a week and plays on a Sunday, well I went down to only have a look to see what it was like but before to long I was welcomed with open arms and got to join in, this is where I felt included in some recreational sports which I loved. It was my first year and after a few trainings the season was underway, ends up we got through the season including myself with no injuries, we ended up going through to the finals and winning the premiership in my first year!

Sadly due to COVID-19, the league/season was postponed this year, but I'm looking forward

to the pre season so I can get back into it next year and hopefully we can go back to back.

Earlier in the year (2020) Dad and myself were offered the opportunity to move out of Melbourne after waiting 11 years for a house, an application came up and with the help of Co-Health we moved our things over a period of 3 weeks, since then we have had extra space to move around which is such a relief and of course more fresh air, though through the winter the weather was not the best. But over all the move has been a good thing the only down side being the amount of travel I now need to do whenever I have to attend a Doctor's Appointment and with Melbourne going into lockdown due to COVID-19 over the next few months travel to and from the hospital became

a trickier proposition but we were able to handle it.

The move to Geelong has became a big factor for me not only moving away from my mates

who I spent the last 8 years living near which was tough, but I haven't moved far away as such

just a trip down the highway which is good as I am able to continue playing cricket and footy

once they recommence for the new season. As much as COVID-19 has been tough not just myself but everyone, this has actually helped me. I was able to put money away and save for the most

of 2020 and it was around in October I actually had enough put away to

PURCHASE MY FIRST CAR!!!..

I never thought I'd be able to do it but with the determination and motivation

I was able to get it done, I have now become more happier, relived and comfortable

with my new surrounds and scenery.

Just lastly... I couldn't have got through all these years without my family and friends

who have been the best support I could ask for, without them I wouldn’t be where I am today

or the person I have grown up to be without their amazing love and support.

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And now life for me is quite interestingly busy and a whole heap of fun.

I don’t let my Kidney Disease define who I am, I define it! and I always try to Live Life to the Fullest, like Shaun did, because no one knows what’s going to happen, in a split second it could

ALL be gone, but as Shaun said life truly is AN AWESOME RIDE.


Thank you for taking the time out and reading my story.

Nick Williams <3

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