Just Diagnosed. Looking for support

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Just Diagnosed. Looking for support

Postby Rach0101 » Thu Mar 08, 2018 8:43 pm


I have been having a lot of UTI issues, excessive thirst among other symptoms so I went to urologist. They did a CAT scan looking for kidney stones and they found PKD. I am 32 and I am a single mother. I have never heard of this disease before. When the doc told me this I was really surprised. Of course, immediately after my appointment I was looking for support and contacted my mother. Her first response was "wow are the doctors sure they are not stones??" Meaning she thinks the doctors don't know the difference between a kidney stone and a cyst. Then she went on to say other things like "do you think your anti depressants medications caused this?" I felt so frustrated and upset I just stopped talking to her about it. I then reached out to friends and I have gotten the attitude "well at least know you know what the problem is!!" This happened days after I found out. Why would I be relieved to find out i have a chronic kidney disease? Why would I be happy or excited about that?? I feel so sad and alone. I am scared because I have drank a lot of coffee the last 4 years and have not had a great diet. I am thirsty all the time. Going for a nephrologist appointment on the 13th and it seems so far away...


Re: Just Diagnosed. Looking for support

Postby SSMPKD » Fri Mar 09, 2018 8:41 am


I think what you are feel right now is normal, and probably how a lot of us felt when we first heard the diagnosis. I was 27 and newly married, hospitalized because my kidneys were not functioning properly and completely overwhelmed as my mother had passes away at 42 from kidney cancer.

I am now almost 45, living a normal life and taking care of myself. You will see the nephrologist, get some more information and start to make easy decisions to help you feel better. What has worked for me is zero caffeine, limited alcohol, and physical activity. I feel my best when I am on track and taking care of myself. I can tell you that there are many many many days when PKD does not even cross my mind!

Good luck and stay positive


Re: Just Diagnosed. Looking for support

Postby Rach010 » Fri Mar 09, 2018 3:29 pm

Thank you for your reply. I think I am feeling more overwhelmed with the lack of support than the actual diagnosis. Going to see a therapist tomorrow and maybe they will have some light to shed. I don't understand why people are dismissive when I tell them about PKD? It is very hurtful. It makes me not want to even tell anyone about it. Anyway, thank you again for your reply and hopefully I will get to a point where I also don't think about it for days at a time.

Chris Trowell

Re: Just Diagnosed. Looking for support

Postby Chris Trowell » Tue Jun 12, 2018 5:18 am

I have recently been told I have advanced P.K.D .I've know I had the disease for about 3yrs . I'm 56 yr old male . Im in good shape but drank and smoked most of my life . But have since quit .I'm very worried about the next steps transplant. How can I work. I'm a professional muscian. I need help but don't know where to go

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