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Archie2016Archie2016 Member Posts: 2 Listener
edited March 2019 in PIP, DLA and AA
Hi. Im new to this forum. Im 51 years old, female who has got polycystic kidney disease. My kidney function is 24% up to nov last year. I receive pip for basic daily living & parttime occupational pension. I struggle every, i good days but more bad days. DWP gave me 2 years for pip this was last year so i am now worrying & waiting for a letter to come through the post stating my pip will be up for renewal. I havent got the energy or function to ongoing with this. I just wondered how does it effect everyone else im sure everyone is didferent.


  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Welcome to the community @Archie2016 thank you for sharing this with us. A lot of our members will be able to relate to you, you're not alone in feeling this way. How are you doing today?
  • bracabraca Posts: 85 Member
    Hello @Archie2016 as you will be aware there is no cure for Polycystic Kidney disease and only having a Kidney transplant will help you and even then that has its own problems.

    The effects you suffer from the Kidney disease that got you award of PIP last time I imagine you still have if not worse for example ( Fatigue, feeling sleepy all the time, low moods and possibly Gout ) at 24% Kidney function is ok but when you reach 15% that is when you will start having to think about Dialysis, At moment you will probably be seeing Renal Consultants at clinics every month or so and may find your medication increasing too, Are you a member of Renal patient view ? were you can log in and check all your blood results and see letters from Consultants when you attended clinic. try and keep your spirits up and remember you are not alone on this journey.
  • Archie2016Archie2016 Member Posts: 2 Listener
    Thank you for info. I have renal patient view but there never seems to be any letters etc only my results. 
  • twonkertwonker Posts: 617 Member
    edited March 2019
    This post reminds me of my wife. True in her ways she never gives in despite having a body racked with Arthritis. She claims no benefit for this or the difficulties that it causes. However it was only by a chance comment from one of my friends last week that I (she, on her behalf) obtained her medical records off the internet. We were both surprised to see what else is wrong with her. She too has polycystic kidney disease along with liver cysts which we both had forgotten about because she seems to have dropped through the cracks of NHS care over the years.. Must contact the GP (they change so often neither of us knows who is running the practice anymore) to seek advice. 
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