just diagnosed and a bit worried

Hi,

following a CT scan I have learned today (New Year's Eve!) that I have polycystic kidney and liver disease. Bit of a blow as I feel perfectly well and thought the scan was just precautionary! Recent blood tests were done to check for thyroid, cholesterol, diabetes and anaemia and everything was normal. The scan shows a number of calcific densities in the pelvis, a 1cm calculus in the left kidney, which atrophic and compensatory hypertrophy of the right kidney. I want to be positive and realise that if I hadn't had the scan (for bowel problems-there aren't any-) my kidney disease could have continued undetected for years. I'm nearly 60. Does this mean I have kidney failure? I have read through many of the questions and answers on the site and there are clearly a lot of knowledgeable and sensible people here. Any help and advice gratefully received!

7 Replies

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  • Hi Defier, sorry to hear your news but this doesn’t mean you have kidney failure, it can take a long time for Polycystic Kidneys to affect you. I am now 43 and was diagnosed at 19 and am only just having issues. I am guessing the next step will be to have another blood test which will determine how they are functioning, this will also determine whether you need to be refered to a specialist. People can live there whole life with this disease and their kidneys still function adequately to keep them well. Good luck and I am always around if you wish to talk more. Niki

  • Just submitted a reply and it seems to have gone to an 'unfound page!' Here goes again ...

    Thanks for your response Niki. I'm sorry to hear that you are starting to have issues. My only symptom at the moment appears to be a dull discomfort in the region of the left kidney, though I guess I have had ADPKD for years, if not all my life. I have an appointment with my GP on Friday and hope to be referred to a specialist. Thanks again and good luck to you too

  • Hi Defier,

    Please feel free to ring the NKF Helpline at any time to discuss this on the freephone telephone number 0845 601 02 09

    Pauline NKF

  • Hi

    Is your PKD genetic as I know that a lot of PKD sufferers are part of a long family history of sufferers? I have also attached a link to the specific PKD charity which may have some specific assistance too

    pkdcharity.org.uk/

  • Hi, thanks for your reply and the website. I have read about the genetic links. My father died, aged 69 from pancreatic cancer and this is why my consultant ordered a CT scan because I had unexplained discomfort (its not pain) Father had diabetes for several years and having read up on PKD I realise he was on various medication that could be related to PKD. I've since checked the death certificate of my mother, who died of a sudden heart attack, aged 80, and she had atherosclerosis. So looks like it could be genetic! My brother, 3 years older than me, has diabetes. I have a daughter in her mid 20s. Haven't told her yet. Need to get some more info from my GP before i approach the subject.

  • I know it might be hard but you really need to talk to your daughter as she will need to be checked, as she will have additional things to concider. Ror example having children. As we all know when having a child it puts pressure on our kidneys, therefore if she has PKD it will put more pressure on, also she has to consider whether she wishes to pass it on (50/50 chance). I know this is a little negative but you need to have this conversation. I remember it was hard for my mum when she had to have it with us and I was 6 months pregnant at the time. Good luck

  • Hi Niki, I know you're right. My daughter has been away and I'm seeing her for the first time today since I got the diagnosis. I have seen my GP and apparently my bloods in October showed a GRF of 68, my blood pressure is on the low side of normal and creatinine well within normal limits. I have an appointment next with a urologist to discuss a kidney stone. So, for the moment I'm very lucky-just at stage 2. Hope you are feeling okay

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