PKD – Jennifer’s story

My journey began at the age of 16 when my whole world changed.

My mother – aged 49, who previously had been well, became very ill.
After many tests she was diagnosed with PKD –a genetic disease. The cause of her own father’s death many years earlier was inconclusive and as her mother lived until 94 – it is strongly suspected that her father carried the rogue gene.
After diagnosis, my mother was placed on dialysis – initially in hospital then at home.
My parents did not speak much about this disease so it was incredibly confronting for my sister and I to see our mother “hooked up” to a machine (which in those days, took up most of the room) each night. She would dialyse overnight and my sister and I would take turns in helping her “disconnect” the machine in the morning as my father left very early for work. This involved removing a needle from her arm, stopping the bleeding and cleaning the machine – I would then go to school and my sister to work. Sometimes the bleeding would not stop and I would call an ambulance.

My mother continued this regime for 5 years until one night whilst on dialysis she had a stroke. A cerebral aneurism can occur with PKD. She passed away 2 weeks later.

My sister and I were then tested and diagnosed with PKD. The gene had been passed to both of us even though there was a 50/50 chance of inheriting the disease.
This was in the mid 1970′s. Treatment options were few and my sister and I were told to go home and “not worry about it until you are older”
No information about blood pressure monitoring, diet, lifestyle or health options!

Fast forward to the 1990′s and now under a Renal Specialist my blood pressure and lifestyle factors were beginning to be monitored carefully. At age 57 I am now heading towards dialysis or hopefully a transplant within 3-5 years.

My daughter has been diagnosed with PKD (aged 21) and now she is being monitored closely through regular blood tests, ultrasounds and Specialists visits.
There is certainly more hope and options for her in the future than there has ever been.
I can only wonder if my outcome would be different if I had the same level of support as she has now.

Lifestyle diseases are avoidable – PKD is Genetic – luck of the draw, bad luck etc , call it what you like. WE MUST FIND A CURE!

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One thought on “PKD – Jennifer’s story

  1. Thankyou for sharing your story Jennifer. It’s stories like yours that make us so passionate about these causes, as I am sure you know kidney donors are in high demand, its so important to make sure everyone has the talk with their family about organ donation. One simple conversation can save up to ten lives, lives like Jennifers! We hope you get the care you need. Thanks again for sharing your journey.

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