Resource for many things kidney related

Posted by Ginger, Volunteer Mentor @gingerw, Aug 15, 2018

Over three years ago I was diagnosed with a very rare kidney disease. With less than 50 in the world ever diagnosed, it was determined I might be the only patient in the US. In an effort to find information that was useful, I found http://www.rsnhope.org, a website formed by an almost life-long kidney disease patient. Lucky for me I lived only 70 miles each way from the monthly support group meetups, and have been attending since April 2015. Lori Hartwell has populated her website with so much information! I am not associated with Renal Support Network, except to attend monthly discussion groups, and volunteer my time as needed. I have no vested interest. But I strongly believe there is a lot of information available there for anyone with kidney disease, family members and caregivers.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

I just did lithotrispy and it says lots of things not to eat to prevent having more stones, so I am so confused what to eat. Even spinach I can't eat, but it says you can have cheese, but isn't that salty also since I can't have salt

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@kogima Welcome to Mayo Clinic Connect. I have Stage 4 Chronic Kidney Disease (CKD). I have found it helpful to get information from a renal dietician or nutritionist. Do you have access to someone like that?

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We are finding conflicting information for foods between the diabetic and renal diets.

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My husband has CKD, and after an injury from an enlarged prostate that blew out, his kidneys were left with very little function, so he is now in stage 4 and we have been educated on dialysis, as an eventuality. We have managed his diet carefully for several years based on the CKD nutrition information we were given. However I have recently come across a book called Stopping Kidney Disease that claims that some forms of CKD may be able to be stopped with a drastic diet change, which has been recommended for years in other countries. It lays out the science and the diet. I am just starting to explore this, but it might be of interest to others. Their website is kidneyhood.org. I got one of their books from my library and have ordered the others so I can assess it for myself.

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