PKD, anyone out there familiar with this?

pippaT
pippaT Community member Posts: 5 Listener
edited October 2018 in Rare, invisible, and undiagnosed conditions
Hi, my name is pippaT and I have Polycystic Kidney and Liver disease. Is there anyone here that has the same or cares for  someone with the same. I would love to find other PKDers to chat to and compare notes etc. Also having the all too familiar problems with PIP and ESA,  but that's another story! 


Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,605 Championing
    Welcome to the community @pippaT

    @Manchestergirl66 has mentioned Polycystic Kidney Disease before so maybe you can connect with them :)

    I also found the PKD support website that has a support number and support groups.

    If you need more support on benefits you can check out the PIP category and the ESA catoegory.

    We are a friendly group though, so do jump in and get involved, if you have any questions, then please do let us know.
  • Ami2301
    Ami2301 Community member Posts: 7,879 Championing
    Hi @pippaT  Welcome to the community! :)
  • Manchestergirl66
    Manchestergirl66 Community member Posts: 7 Listener
    Hi 
    I was born with this what would you like to know 
  • pippaT
    pippaT Community member Posts: 5 Listener
    I don't need to know anything in particular,  I just hoped to find ther people with PKD that I could chat to. It can be a lonely disease. X
  • pippaT
    pippaT Community member Posts: 5 Listener
    Manchestergirl66
    I just wanted to find others with PKD to chat to. It's a lonely disease. X
  • Manchestergirl66
    Manchestergirl66 Community member Posts: 7 Listener
    Very true it is  have you had your lungs checked because one of the things with it are under developed lungs   people don't understand how susceptible you are to bugs etc and not able to do normal stuff that they take for granted 
  • pippaT
    pippaT Community member Posts: 5 Listener
    I wasn't diagnosed until I was 30, so wasn't born with it. I have kidneys the size of rugby balls and a hugely enlarged liver. I had a liver resection 3 years ago. I'm under a great specialist at QE Birmingham.  My daughter, 24, was diagnosed 2 years ago, my dad and my elder brother also have it. I'm battling with PIP and ESA at the moment even though I was medically retired 6 years ago. Sorry for the ling winded reply, just good to find an ally. X
  • Manchestergirl66
    Manchestergirl66 Community member Posts: 7 Listener
    I know how you feel and it probably scared the hell out of you  I'm one of the few people in the world that have got past the age of 30 and have children  it's sad that you have so many family members with it when I talk to people they are amazed that my kidneys look like a bunch of grapes as opposed to the normal look. I suffer with tiredness alot and also medically retired 
  • pippaT
    pippaT Community member Posts: 5 Listener
    It surprises a lot of people when you explain about the disease, doesn't it. I'm 51 now and my kidney function is declining but I remain upbeat because you have to. The biggest downside is I can't go to a family member for a kidney when I need one, how inconsiderate of my family to all have it! I suppose it will stop us all fighting over one though ?
  • amziegrace
    amziegrace Community member Posts: 2 Listener
    Hi there. I just found your thread. I was recently diagnosed myself. I am a 34 female, with several cysts on both my kidneys and liver, with a slightly enlarged liver. I'm here to chat if you're still interested :)
  • Tori_Scope
    Tori_Scope Scope Posts: 12,443 Championing
    Thanks for commenting @amziegrace :) How are you finding navigating a new diagnosis?

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