Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

Nephrologist for PKD in Orlando

puppy81
puppy81
Hi all,
I have recently moved to Orlando and I am looking for a good nephrologist with specific interest in PKD. Any recommendation? I have seen nephrologists who hardly know what is PKD, what is going on with PKD research etc. I am young and do not have any major problems with my kidneys yet. So I would prefer to work with someone who can guide me to make better choices over time. Any help is highly appreciated. If this forum is not right for this sort of question, please let me know.

Regards
Puppy81
deleted_user
deleted_user
can't speak about Orlando but yoyu might want to contact PKD Foundation for a recommendation.
in the meantime ask any questions here, we have loads of collective experience.
for start, avoid sodium and drink plenty of water. avoid medications that are not recommended by your nephrologist. no smoking, ,alcohol in moderation or not at all, caffeine same. some will say not at all but one coffee a day should be acceptable if you use it. no coke or pepsi at all. there is no evidence that protein affects cyst growth but again, moderation is key. vegetable sources of protein are best but if you enjoy meat, cheese, eggs don't feel you have to stop.
good luck & let us know how it goes in Orlando.
puppy81
puppy81
Thanks for the help and advice. I did get a recommendation from PKD foundation local chapter.
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