27 and scared

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27 and scared

Postby Justme » Thu Jul 26, 2018 2:04 pm

Hi everyone,
I just got the news that I most likely have pkd. My bio father has it and when he found out he was in stage 5 and at less than 10 percent kidney function.
All of my labs are good, GFR is above 90 and urea and creatine levels are great along with my liver function. I do have multiple cysts on my kidneys though.
I have my first nephrology appointment and I am flippen TERRIFIED. What happens at the first appointment
Is it good that is caught early? I am only 27. Please help.


Re: 27 and scared

Postby SSMpkd » Fri Jul 27, 2018 7:18 am

I too was diagnosed at 27, and am now 45. Take a deep breath and stop reading too much on the internet....it can be a scary place. A GFR of 90 is really good in my view!

This is typically a slow moving progression and very little has changed for me since I was diagnosed. It is great to be diagnosed earlier as it allows you time to make changes now that can help you further down the road. I gave up caffeine as it is a stimulant that can increase cyst size / growth. Drink plenty of water - litres and litres a day to keep things flushing through. I also find that staying active helps me manage PKD better.

In the years since I was diagnosed I have had a few issues with kidney stones, plenty of infections but for the most part I am very healthy and live a completely normal life. There is now a drug that can slow the progression of PKD, and that has only been in the last couple of years. Previously there was nothing available to address PKD.

See your dr, ask your questions and continue to live your life!

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