Would you want to know?

June 7, 2017

I’ve written before about how I have Polycystic Kidney Disease (PKD). It’s not really a big deal, and I don’t like to make a fuss, it just is what it is. To be honest I mostly ignore it. However, I do try to live a healthy existence (I don’t exercise enough though!) to try and keep my kidneys working well for as long as possible.

The thing is, though, PKD has always been there. It’s an hereditary disease, you see. My mother has it and her mother had it before her. My mum was in renal failure by the time I had started school. So my childhood was full of hospitals and dialysis and eventually, when I was seven, my mum had a kidney transplant.

I’m not trying to garner sympathy here, I’m just telling it how it is. I have huge admiration for my mother and the way she took everything in her stride. She firmly believed that everything would be okay and that the doctors knew what they were doing. It seems she was right, as more than twenty five years on, her transplanted kidney is still going strong.

Personally, I was diagnosed with PKD when I was around eleven years old. I had an ultrasound scan of my kidneys for an unrelated purpose (at least I think it was an unrelated purpose!) and the sonographer spotted the tell-tale signs of cysts on my kidneys. These often don’t show up until people are in their twenties, so in a way I was ‘lucky’ that they showed up then.

Anyway, I was gutted. I remember going home to my bedroom and sobbing, feeling like my life was over before it had begun. Obviously nothing really changed as my kidneys were, and still are, perfectly healthy other than being covered in cysts and larger than normal. Nothing changed in real terms, I just had this shock of knowing that I had this thing called Polycystic Kidney Disease, and that one day, my kidneys might fail (there’s actually a 40% chance that they won’t. I’ll take that).

As I said, though, it’s hereditary.Via a dominant gene. Which means there is a fifty percent chance that any children I have, will have PKD.

A fifty percent chance that Little M will have PKD.

So in February, we visited Addenbrokes hospital to find out whether we could determine whether I have the type of PKD that can be genetically tested to see if it has been passed on.

I do.

It can.

Now we have to decide whether or not we want to know if Little M has Polycystic Kidney Disease.

What would you do? Would you want to know?

Getting a PKD diagnosis


4 responses to “Would you want to know?”

  1. Mrs H says:

    Oh honey, this is such a hard choice. I have some friends who have a similar decision to make about the BRCA cancer gene. I think that I personally would want to know. Because then I can think about the best way to talk to my children about it. I would also want to know what could be done to help them. But it really is a personal choice and you should do whatever you think is right for you and your family. Hugs Lucy xxxx

    • Jules says:

      Thank you, Lucy. I think I’m leaning towards finding out as I don’t want to waste time worrying about something that needn’t be a concern xx

  2. Tinuke says:

    I think know I’d want to know so that if my daughter had it too, I’d be in control of the narrative. It’s hard and whatever you do will be right for you!

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