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New to this

Postby Jeannine » Tue Jul 10, 2018 8:51 pm

Good evening ,

I hope everyone’s week is going well , I was diagnosed 18 years ago . No real issues till now .my kidneys are at 30% . Of course I have dug into the web however I think that makes me more nervous . Questions . How long can I stay like this ? Can they ever get better? I already stay away from salt and most of the things that I have been told are not good . So what do I do !


Re: New to this

Postby Mark » Wed Jul 11, 2018 4:54 pm

Hi jeannine,

From what I've read dialysis usually starts when your kidneys get to 15% function. From what I've read, people with ADPKD will on average lose about 5% function per year. Depending on how you are tracking, that would give you about 3 years minimum - but it depends on how slowly/quickly this is happening for you. How old are you? If you were diagnosed 18 years ago, it wouldn't appear to be faster than normal, but let us know.

The only drug approved for the treatment of PKD is tolvaptan, and that slows down the rate of decline by approximately 33% I believe. It can't make anything better - just buy more time. What part of the world are you in? I know in my part of the world it's not available yet, and in most parts, it seems to cost quite a bit of cash.

Transplant is really the only way to go for the moment, and will give you generally 10 or more years of dialysis free living!

Hope this helps in some small way. Try not to let it consume you!

All the best,

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