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Today’s topic is:

Polycystic Kidney Disease.
Special episode as today is PKD Awareness Day.
I’ll talk about my tangle with PKD.
How I juggled health, work and family.
And how to turn adversity into hope.
 

Transcription:

Hello to The Build Live Give solo podcast episode number 231
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I would like to dedicate this podcast to my mum – Moria Higgins who passed away on the 18 July 2019 of kidney failure.
Mum had Polycystic Kidney Disease (PKD). It is 50/50 at birth.
My brother has it and my children are yet to be tested.
The release date of this podcast coincides with PKD awareness day.
PKD is a genetic disorder that causes many fluid-filled cysts in the kidney. These cysts can change the shape of your kidneys. This ultimately leads to kidney failure.
For me, they have grown to about the size of a soccer ball. Some weigh up to 25 kgs each.
In the world, it impacts 1 in every 400 to 1K people.
500 thousand people have it in the USA and around 25K in Aust according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). What a mouth full.
 
There is no prevention for PKD.
I walked out of my doctors aged 18 to see my mum in the car park. I didn’t have to say a word – she knew.
She was heartbroken and blamed herself. She watched her dad pass when she was 12 and she suffered a heart attack at a young age. She knew my life was changed forever.
It was at that moment of adversity I decided to look for hope.
I became high performing in all aspects of my life. That was something I could control.
I will fast forward to 2011 when my specialist suggested leaving corporate to prolong my kidney function.
On average you can live 10 years on dialysis and 20 years with a transplant. The longer I lasted with my poorly functioning kidneys the greater the chance of seeing my grandchildren.
I was close to a model patient and did what was asked of me. Giving up alcohol and my favourite foods was a small price to pay.
I created a business I could run from anywhere preparing for the inevitable – kidney failure.
I love to be in control – ask my family – but the pace of decline is unique to each person.
 
For seven years I fought hard and the sense of not knowing when was mentally draining.
At the same time, I was watching my mum fighting for life with multiple complications. She never complained and it put my fight in perspective.
I built a new house and prepared for the best and worst-case scenario for my family.
On the 4th of November 2018, I went in for a regulation nephrectomy (removal of my soccer ball kidney) to create room for a new one.
Let’s just say it didn’t go to plan with me waking up in ICU being told I only just pulled through and I had a cut from one side of my body to the other – which looks like a shark bite. This is great entertainment for my children’s unassuming friends.
I recovered slowly whilst continuing to work from my hospital bed. The business I had built to run from anywhere was essential for my mental stability.
I went on dialysis 3 days a week for 4.5 hours a session and wrote my book Build Live Give.
In February 2019 my best friend Brendan donated his kidney and it couldn’t have gone smoother.
I will never know, but I got the sense mum hung on to see this happen. A small way of mending her broken heart 31 years earlier.
 
I have many reasons to be thankful for what PKD has given me:

  1. A unique bond with my mum as we shared our experiences (we also shared a birthday).
  2. A gift from Brendan I can never repay him for.
  3. The opportunity to leave corporate to run my business and help people globally.
  4. The opportunity to see amazing healthcare workers at their best.
  5. The ability to embrace technology to work from anywhere before it became the new norm.
  6. The tenacity of living with 6% kidney function – think of your worst hangover 24/7.

In a time where many of us face enormous adversities, there is hope.
I would like you to do one action from today’s podcast
Register to become an organ donor.
Put hope into someone’s life.
If you know someone who needs some hope, please share this with them.
Please take action to increase your profit to fund your lifestyle
And stay well
 

Links

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