Diagnosed with ADPKD aged 30

I turned 31 in August and found out I had APKD in April last year. My mum has the condition and her father died of it at the age of 61. I look very similar to my mum and we are very similar people generally and therefore deep down I always thought I would have the condition. Nevertheless it was still upsetting when I got the news from my GP. I was then referred to Salford Royal and there was only a short waiting time of about 3 weeks. I saw the Consultant in May and of course whilst it is not nice to receive such news the care I have so far received from the renal service at Salford Royal has been second to none. The Consultant talked me through the condition and the long term effects, she also took a detailed medical history from myself and my mother who attended the appointment with me. I have had high blood pressure for nearly 10 years which despite repeated visits to the GP has been ignored. I am now on blood pressure medication and this is being closely monitored which is a relief.

My mum is under the care of a different NHS Trust and she cannot believe how much better the care I am receiving is. My appointments haven’t been rushed and the Consultant is extremely personable. I also received the advice to drink 3 litres of water a days something which my mother has never been told. Whilst I am upset I have the condition I do feel lucky to be receiving such good care.

As a result of my mum (it has since turned out mistakenly) believing that my grandfather died of an aneurysm I was screened for these in June as ADPKD is linked with a higher rate of aneurysms. In July I received a telephone call on holiday from the renal consultant that the scan had showed 2 small aneurysms. Understandably I was very upset.

The scans had to be reviewed by a multi-disciplinary team and therefore I was not seen by the neurosurgeon until the end of September. At this meeting I was told that the aneurysms are on different sides of the brain and the procedures that can be performed to treat these. Whilst it has been an incredibly difficult decision to make I have decided that given my age I personally cannot live with the fear of them rupturing. I have always been a positive person but the last few months have been very tough for me. I am scared about having them treated but I also think I would spend the rest of my life worrying about them (and ultimately making myself ill) if I didn’t have them treated. I know that it is totally psychosomatic but I get headaches I never had previously and feel like I can almost feel where they are in my head, which I know is totally impossible.

I am due to have the first aneurysm treated by craniotomy on the 21st January, unfortunately they cannot be treated at the same time which means having the procedure twice which I am trying not to think about at the moment and just take one day at a time. I am incredibly lucky as I have wonderful friends and family, I just could not have coped without their support. Fingers crossed I will all go according to plan and I will be back on my feet soon as I certainly owe a lot of people a large thank you drink!

3 thoughts on “Diagnosed with ADPKD aged 30

  • Thanks for posting your story Citygirl, you’ve had a lot to contend with. Like you, despite being ill for sometime, I wasn’t diagnosed with ADPKD for many years because my then GP failed to check my blood pressure or take a family medical history.

    As regards to your ongoing care I can’t speak highly enough of the help and support I’ve had across many departments at Salford Royal. From the renal team through to the surgeons I’ve always felt safe, reassured and in competent, professional hands.

    Good luck and best wishes for the craniotomy on the 21st and please keep us updated on your progress.

    Rob Finnigan

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