PKD Charity for Autosomal Dominant PKD
570 members119 posts

My Story

I am a married mother of 3 boys and I have PKD and PLD. I was diagnosed in 2002 during a routine scan of my second pregnancy. There is no family history because I have mutated a new gene, rather clever of me!!!

Several years later and my kidney function remains within normal limits, however the size of my kidneys and liver causes me a lot of pain and discomfort, not to mention the added humiliation of being asked if I am pregnant!

Vanity aside I consider myself lucky to have only been in hospital once with an infection and I have learnt to have a very high pain threshold!

The biggest worry for me is my beautiful boys, I pray that either they are PKD free or medical research advances so much that it will not affect them like it has so any people that I know.

6 Replies


It is good to see I'm not the only one who has mutated a new gene!! I was diagnosed in July this year when I was admitted to hospital with pain in my abdomen. It was a burst cyst. It was quite a shock as I have no family history either of course. I am in pain every day, I also have cysts on my liver. I am yet to return to work and really struggling if I'm honest. I had an MRI scan yesterday (I've previously had 2 ultrasounds and a ct scan) which I hope will show more of what is causing the agony I'm in.

I have 2 sons who I worry will have inherited this from me.

It's good to meet someone in a similar position



Hi Mandy,

Try not to worry, there are loads of us mutants about you know!!

This must have been a huge shock to you but you can and you will get through this. The PKD Charity is a great source of information and there is always someone to talk to.

I get through my pain by focusing on all the positives in my life and keeping as busy as I can.

Stay strong Mandy and I am here if you want to chat.



I would recommend the PKD Charity's email support group. Its an international community with members at all stages of kidney treatment and we dont just natter about kidneys and hospitals either. Ive been a member for years so have a look at the pkd charity site or email Tess at the charity and ask to join.


My story is very similar, except that I have two boys. Is there a plan with your liver? Look forward to sharing.



i am diagnosed with pkd on 13 july 2015 , feel very shattered . how are u now

believe me it is becoming very hard to look into my kids eyes (6years girl and 3years boy) still unable to come to terms , why me . future seems a harsh joke .


Dhillasam, I'm so sorry you feel so shattered by the diagnosis, but please don't give in to negative thoughts which are ,of course inevitable, with PKD sufferers like us. I was diagnosed 10 years ago with a lump in the liver, sent for scan and turned out to be PKD which sometimes affects the liver as well. I had a liver resection and growth of cysts kept in check until this March when I had a major cyst drained. Kidney function has deteriorated over the years but I blissfully or ignorantly went on with my life, working and travelling. Was told by my nephrologist to just enjoy my life, exercise and eat everything as he noticed my haemoglobin was going down when I tried to follow a vegetarian diet.

Hope you are seeing a nephrologist who can keep an eye on your blood tests and give needed advice as every case may be different, and readings show different areas of concern. All the best, with two adorable young children, you have every reason to fight on!


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