I did not learn I had kidney disease until I had lost nearly 70 percent of my kidney function. This is not unusual because kidney disease generally advances without obvious symptoms. Recent research indicates that over 26 million U.S. adults have kidney disease, and 95 percent are unaware of it. Meanwhile, their failing kidneys are increasing risks for cardiovascular disease and causing other ailments. My kidney disease, called Alport's Syndrome, causes the filtering units (nephrons) in my kidneys to slowly self destruct. I reached the point where I needed dialysis or a kidney transplant to survive. My daughter Jennifer donated one of her kidneys to me. We each had an eventful two-day hospital stay following surgery, and the recovery was remarkably easy.
After I learned about my kidney disease, I began actively researching the subject. I was desperate to learn whether I could slow down the progression of my disease; if I could otherwise stay healthy; if certain foods would improve kidney function; whether the filtering units in the kidneys could regenerate (no); and if a cure for kidney disease existed (another no).
Bookstores generally had no books on the subject. I ordered dozens from Amazon and other sources, only to find them to be outdated, or medical text books, or too narrow in scope, or just plain wacky. I became frustrated with on-line searches because of the need to visit multiple sites for appropriate information, and then often finding that information inconsistent. I wanted one source that had it all—clear explanations, recent research, current statistics, a healthful diet, and exercise information. Nothing existed.
Added to this, I did learn that most individuals with kidney disease don't inherit it as I did. About 80 percent of the time, kidney damage is caused by diabetes or high blood pressure, and in both cases can be slowed or stopped, if the person is aware.
So, following transplant surgery at Indiana University Health and with the help and encouragement of Dr. Tim E. Taber, Jennifer and I decided to produce a book that really assisted people at risk for or with kidney disease. Dr. Taber is Chief of Transplant Nephrology at IU Health and a leading nephrologist. After two and a half years of research and writing, and close editing by Dr. Taber, KidneySteps resulted. It was published last July and then received a book award in the category of "Health" in November. We then developed a companion web site with the same name to provide updates regarding kidney disease developments.
I will continue to blog about my experience, the latest research developments and, tips for families dealing with kidney disease. I hope you find this information valuable and that you will share your experience too.