Medullary Sponge Kidney Disease (MSK) Community
kidney removal/transplant in MSK patients
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kidney removal/transplant in MSK patients

As a whole, what percentage of MSK patients lose a kidney  or require a transplant!? It is Very important that I find an answer to this question. Thank You so Much! Sincerely,  DoodleBUG
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168348_tn?1379360675
Hi,

MSKShelly may be able to help but she's been offline for a few days ...

My Urologist stated to me that 1% of all with MSK encounter severe kidney problems .. but I'm only repeating what he said, and don't have references for you to back it.

WELCOME!

C~
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489228_tn?1291535054
Sorry that i have not been on here sooner, my life has become very complicated right now, with going through a divorce after being married for 27 years, being a stay at home mom
and now chronically ill and my ex has paid no child support etc. So forgive me trying to keep my head above water and provide for my kids animals etc.

The percentage of MSK patients that have their kidneys removed is low.  From all my research I have not seen a number only the statement that MSK rarely results in the loss of a kidney etc.  Keep in mind SUPPOSEDLY 90% of MSK patients have no symptoms.
I personally don't think this is accurate, I think 90% of doctors blow of their MSK patients with unexplained pain!.. But that said reports states that 10% of MSK patients suffer from chronic stones and infection, then what percentage of that loses their kidney
would be hard to get a number.  I personally am trying to get all statistics and data collected I can and have talked to 100's of MSKer's around the world.  Once I am on the other side of this divorce that seems to be out to destroy everything in my life.... I hope to get back to work on the things I love including research to help us!

The other issue with kidney removal is that the remaining kidney must the filter 2x as much and often deteriorates much quicker as well!

There is also another procedure that has been tested.  It involves removing the kidney
from the nerves and reattaching it into the body.  I have seen this done in one patient for whom it seemed to help greatly.

I hope that helps some and again I apologize for not being in here!

Shelly
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