Pecha Kucha

This was a presentation I did back in May for Pecha Kucha, (Google it) Dunsborough. It’s a cool platform where people from the community where it is held, get to share their story. It is ran internationally and I was privileged enough to be asked to be part of it. It is ran in a certain format where you get 6 minutes and 20 images to tell your story. Quite an effort! How would you tell your story, in this format, given the opportunity? Enjoy………Maria
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Daughter of Italian migrants, grew up on 50 acres in the hills of Perth with one brother and one sister. I really had an amazing childhood with of loads of space to run and immersed in the culture. It seemed I had the perfect start in life.

I was a healthy bub until gastro like systems crippled me and in the space of a week, I was rushed to hospital where the instant decision was made to operate as they discovered I had a huge infection in my gut. Something I ate or drank gave me a rare kidney disease. It had destroyed 75% of my total kidney function. I was 9months old.

At age 5 I was shown the kids dialysis unit and was told one day I would end up on one of those. All I remember is these kids smiling hope back at me, sitting on strange machines attached to their bodies. At that point, I knew there was something different about me.

I was pretty much a normal kid until I went into chronic renal failure in year 12. I managed to attend 40% of the school year and while everyone else was studying hard or planning to work, I was trying to ignore the reality of what total kidney failure meant. 

8 months after graduating, my small amount of kidney function I had left, failed leaving me no option but to start dialysis. I was 18 and my life now consisted of going into hospital 3 times a week for 4 hours each time and watching my blood being cleaned through two huge needles attached to tubes. In my eyes, my life was over. Somehow I coped and 6 years later I received the gift of life from my mum. 

I was just shy of 25 and after waiting unsuccessfully on the transplant list with none of my other family members being a suitable donor, my mum basically begged to be retested after being discounted initially for health reasons. I had my second chance. 

After one year of recovery with lots of hiccups along the way I was given the all clear. This was when I met my husband Dan. He was living in Gracetown and 3 months after we met, I moved in. I fell in love hard for him and the South West. A year later we were married. We found solace surrounded by nature and travelled extensively. Although we could never have children, we were happy and lucky enough that the unconditional love of man’s best friend completed our family. I finally felt free.

My transplant started showing signs of rejection in 2008 after getting Ecoli. Unfortunately my kidney finally failed after 13 years to the day of receiving it.  A mystery bug that left me unable to digest food for two years and getting down to 35kgs nailed my kidney and almost me. To say it was cruel is an understatement. Not so much for what I went through losing it but for my poor mum that gave it to me. I was scared facing dialysis again and everything else that went along with it. 

I was showered with love and support by the whole world it seemed, but feeling overwhelmed, I reverted back to one of my passions and therapies, writing. I started a blog called Kidneyqueen so people could track my progress. Through this blog I was contacted by a girl who I went to school with but hadn’t seen in 20 yrs. She remembered my story and obviously never forgot it. She offered me her kidney and I needed to graciously accept it. I couldn’t wait 6 years again.

I started a different form of dialysis this time, at home and able to travel. I had my husband Dan and Erin as candidates. Neither were compatible but a new kidney exchange program created a miracle. They were both put on a list whereby people around Australia in my situation have a second chance by swapping donors. My girlfriend’s number came up and her kidney went to Victoria, the Victorian donor kidney went to Qld and I received a kidney, in an escky, with my name on it, all the way from Qld. I only waited 18 months for my life to begin once again.

I turned 40 in February this year, two days after I celebrated the one year anniversary of my second kidney transplant. We had a huge party. It was a celebration of life. I wanted it to be about Erin and what she gave up for me but to this day she said I helped her as much as she did me. Her reason for doing this was simply to give back. She had found her inner peace through her four healthy children and loving husband and reached a point where she wanted to share that joy and gratitude. The most selfless act from a stranger I have ever known and I was privileged enough to be part of it. It has humbled me to the core. 

I can now live my life the way I have always wanted. We run a bnb from home, where I also have a little recycle clothes shop called cowgirl in the sand. I live in a community where I’m surrounded by people who support me and never let me gave up. Even when I knew my kidney function was coming to an end, Dan and I travelled, laughed and loved. I didn’t feel sorry for myself because being exposed to hospitals most my life, I knew I was one of the lucky ones.Through mediation and yoga I found my inner strength and my saviour was the ocean. It’s always calm under the waves. I was forced to face my fears because for me, it was a case of life or death but so glad I did because it has set me free. If you can do the same, the real you will blow you away.

I learnt the harsh lesson of sacrifice from very early on but I wouldn’t change a thing. I have experienced life in a way I can only describe a caged animal must feel unfairly taken from their right to freedom but I have also felt utter exhilaration getting it back, twice!  Having been exposed to that extreme sadness then having a stranger offer me their hand to help pick me up again, has made me realise that’s the key to it all. Find your happy, then share it. Inside I was struggling but with everything I had been through already, I knew I had to stay focused on the bigger picture. The vision of a happy, healthy me, never ever left my mind.

So now I celebrate my new life by dancing in the dark with a room full of strangers each week and try and do something each day for someone ElseI do what I can to rehome rescue dogs and bring awareness to the cruelty of puppy farms. It helps me be a better person. Our family holidays were going up north and are still the happiest memories of my childhood and became the foundation of who I am today, not my kidney stuff. To be honest that never defined me. No I don’t think about how long this kidney will last, I think about how bloody amazing I feel. Be proud of who you are and if your not, find your inner peace and help yourself, it’s the only way you can really help others.

 Thanks for listening.

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