PKD Stories

Discovering PKD

Guest Post – Vanessa Cullen

Like many people with Polycystic Kidney Disease, I was not aware of having this affliction until my thirties and were it not for martial arts, I may not have found out until my kidney function seriously started to decline. This is a common story as PKD often shows no outward symptoms until mid life and our bodies can seem quite well right up until near failure.

Here’s my diagnosis story:
It was November 2012 and I was training six days a week. In just a few weeks I was going for my Jujutsu black belt grading. Being thrown to the floor was a near daily occurrence. It was without a thought that I hit the ground to start my warm up that Saturday afternoon.

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A Sister’s story

Guest Post By Mel Cornell

My younger brother was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD). The doctors had assured my parents that it was unlikely he would survive the pregnancy, and once he was born it was clear that every minute was precious.

Though most of it’s a blur, I will never forget the constant visits to the hospital and the endless amount of needles. We were very lucky that he continued to fight the disease and as time went by my sick baby brother soon wasn’t a baby anymore.

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Super humans

Guest Post By Alicia Faehrmann

An old friend once asked me if I could have a superpower what would it be? And I replied with something along the lines of once you realise how hard it is to have a ‘normal’ life, you’ll know that just to be human is itself super. Long before I knew I had polycystic kidney disease, I was taught how to live with a disease by the example of other people in my life who suffer from chronic illnesses.

The first person who comes to mind is my mum, diagnosed with lupus at 26. She too suffers symptoms of hypertension and chronic pain and also has arthritis. In spite of it all she constantly pushes herself to be generous with others. While looking after dad and raising four kids, she was often the first port of call for my grandparents whenever they needed anything and would never refuse them. She is also the most reliable person I know, often agreeing to help out a friend here and there, never failing to through regardless of how worn out she is.

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Another way to live…

Guest Post – Alicia

When I was diagnosed with PKD almost 3 years ago at age 22, I took it as a death sentence. But with three ultrasounds, a chest x-ray, a CT scan, MRI, several blood tests and other jabs against hepatitis A & B, 5 visits to a wonderful specialist and many more to to an equally wonderful GP under my belt, the verdict is clear and the sentence set. I got life.

After the initial shock and I’ll admit, disgust at the discovery of the disease PKD, in a strange twist, being a person with PKD has taught me a lot.

Firstly, I learnt a lot about myself. At first it was difficult to come to terms with because I didn’t look sick, I still don’t. Nor can I see the state of my kidneys without the help of xrays and dye or sound at a higher frequency that 20khz. And reading about it made me feel more isolated – the more I read about my illness, the less I felt I knew myself. However upon reflection, being diagnosed with a disease actually made so much sense.

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“we have chosen not to let his condition define him …”

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Guest Post by Jenni Miller

I first heard of PKD in early 2003 when I met my father-in-law, Peter. He was on a dialysis machine set up in the study of their family home.  My husband Damian skimmed over the details of PKD with me that evening, explaining that neither he nor his brother David could donate a kidney to their Dad as they both also had the disease.

Peter passed away later that year – at only 50 years old. It was a huge wake up call and the catalyst for Damien to start thinking more seriously about his future. We married in 2005 and had our first child Ajay later that year.

Damian’s nephrologist appointments were generally uneventful as his kidney function and blood pressure were within a “healthy range” and his specialist said he wouldn’t have to worry about dialysis until later in life. Then in late 2006 Damian took a knee to one of his kidneys in a basketball match and that evening saw blood in his urine. He spent a week in hospital and it was then that we found out his kidney function had declined quite dramatically.

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The Pro’s and Con’s of Actively Engaging with Your Health as an Early Stage PKD Sufferer

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– Written by Vanessa Cullen

With a life history of several serious health conditions I have always been forced to engage with my own health. From an early age I’ve known no different than having to be hypervigilant about my blood and urine results, nutrition and food intake, sleep and stress, and physical activity. When I was diagnosed with PKD though I was certainly given a choice as to whether I should consciously engage with the condition or not.

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