FROM STORIES

It’s hard growing up without a Mum

By Rachel

My mum died when I was seven. She had Autusomal Dominant Polcystic Kidney Disease. I remember her being so unwell on haemodailysis at home. It was traumatic for me; as a young child it was hard to see my mum in so much pain and there was a lot of blood. It was the 70s, a lot has changed in the treatment of this diseases since then.

I didn’t understand much about the disease at the time, but I do recall my dad showing me pictures from a medical journal and trying to explain it to me. I remember a picture of a kidney full of cysts and although at the time I didn’t know what the kidney did, I knew the one in the picture just wasn’t right.

I was diagnosed with PKD when I was 19. I’d had a UTI and some pain in my kidney area, particularly when I started going out dancing as a young adult. Learning that I would follow a similar path as my mum was near to devastating. My kidneys failed when I was 37. I was very unwell in the lead up to this. I went on haemodailysis for 4.5 years and continued to work four days a week. My partner became my carer and my career was put on hold.

In 2015 I received a life saving transplant from a deceased donor. It’s changed my life in the most positive and profound way. Every day is a blessing.

I like to think that my mum would have been proud of what I have achieved despite my health challenges. It’s hard growing up without a mum, and sometimes I wonder what type of person she was, what hobbies she enjoyed, what music she liked and what we would have talked about if she was here with me today.

Finding a cure for PKD is so important, so that less people have to experience what I’ve been through. So many people and their families suffer from PKD but we are still waiting for a cure. I’m positive this will change in the future.

I enjoy volunteering for DonateLife and if I can encourage more people to register to be an organ and tissue donor then I feel I’ve done something positive in return for my donor and their family, and everyone currently waiting for a transplant. No one should die while waiting.

3 comments

  1. Cameron

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    Thanks for sharing. Good to know that i am not alone.

  2. Janice Creenaune

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    Rachel has enjoyed some innovations in the discoveries in dealing with her PKD. She is inspirational in her appreciation, willingness to further nurture discoveries and her support for others. A wonderful story to read and helps others to understand the genetic condition of PKD just that little bit more. The more knowledge, understanding and empathy for the disease is for the betterment. I commend Rachel for her efforts.

  3. David

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    Thanks Rachael. I turn 47 today and the disease is on my mind. You’ve made me realise, again, that I am relatively lucky so far, and that there is plenty to look forward to.

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