how to comfort my guy with PKD :

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how to comfort my guy with PKD :

Postby Sallyrenee » Sun Aug 30, 2015 8:14 am

HI to anyone reading this...My honey has PKD and sometimes I feel really helpless :(
I kind of feel like there should be a PKD Alanon class...Im here hoping to hear some advice..I will take it from anyone...I see him go through so much pain, its unreal...What is it you do to help when it hits hard?? back off, hot bath??


Re: how to comfort my guy with PKD :

Postby tgeraghty » Thu Jul 19, 2018 2:56 pm

Hi There, Just wanted to share that I'm in the same boat. My husband of 13years has PKD. He was diagnosed at 16YO (when we started dating) and now at 38 just got readings that his GFR dropped to 22. We are preparing for what ever will come next, hopefully a transplant and then back to a somewhat normal life but still unsure if that is a reasonable expectation. I read such a variety of different stories and outcomes it's just really hard to know what to expect. As for providing comfort, I really just try to listen to his concerns, be patient and be an advocate for his needs with the Dr's etc. He doesn't work and I work full time so it is trying. I feel your pain and not sure I have the answer but just letting you know your not alone. \


Re: how to comfort my guy with PKD :

Postby jcently » Sun Jul 22, 2018 8:16 am

I am a guy and have PKD, PLD, went through dialysis and received a kidney transplant 10 years ago and I am a Registered Nurse. There is so much to learn, and there are things he can do to change the course if he is willing to make changes which primarily start with diet and modifications to his physical activities. When I was first diagnosed the pain was unbearable but there are things that can be done, of course, every individual is different and the outcomes will depend on that. As a Registered Nurse I have seen a lot and with family members also affected by PKD I can help based on my experience. I also available via phone if needed.

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