Overcoming Kidney Disease

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.

Educating myself

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 I ordered dozens from Amazon and other sources, only to find them to be outdated, or medical text books, or too narrow in scope, or just plain wacky.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.

Educating others

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.

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  • Name: Theresa Forte
  • Posted: 03/21/2017

Reading about your experiences dealing with kidney disease has shown me the importance of self-education and taking control where I can. Your persistence in researching, writing, and developing your website is truly inspiring. Not to mention, so very important with helping others, such as myself, have a resource to go to as we navigate our lives with this disease. Thank you for all you’ve done for others and for your continued help. You are appreciated and I pray for your continued well-being.

  • Name: vicki hulett
  • Posted: 04/02/2012

Jolee, The transplant is great for your sister. She will do very well with it and much better than if she had stayed on dialysis. As to the vomiting, she should call her transplant coordinator, her IU nephrologist, or her surgeon. I have found all three to be very responsive when I was concerned about an issue. The concern of continued vomiting is potential dehydration. Staying hydrated is extremely important after transplant surgery. I have had no post-surgery complications, to answer your question about that. However, I was told that continued vomiting must be addressed. Please go to kidneysteps.com for important information on kidney disease and transplantation. I post 3 times each week, and your sister might find the information very helpful. You can link to the KidneySteps book there or go directly to Amazon for the book. Good luck to your sister. Please tell her she can contact me any time with questions. Vicki

  • Name: Jolee
  • Posted: 04/02/2012

My sister had a kidney transplant on Jan. 28 of this year. She was on dialysis for over 3 years and has been a diabetic for about 20 years. Where can I find your book. Also did you have any complications after your surgery? My sister just called me and said she has been vomiting off and on since last Friday and she called the IU support and they just told her to call back in the morning. She has her weekly appt. on Tuesday, April 3 at IU hospital. Thank you,