According to the U.S. National Library of Medicine, there are 22 early signs of chronic kidney disease (CKD). I never experienced any of them, not even one. So how did I discover that my kidney function was slowly declining? I simply changed primary care doctors because the one I was seeing was too difficult to get hold of.
My new doctor was extremely thorough, so thorough that she insisted on all kinds of tests for the new patient even though I’d had my records transferred to her. All it took was that initial blood test for her to call a nephrologist for me. What frightened me terribly is that I got an appointment the next day. We know that doesn’t happen unless something serious is going on.
After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered a 24 hour urine analysis!
I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier. My high blood pressure had been controlled for 20 years at that time, but what about my diet?
I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, you name it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now. Potassium? What’s that? Phosphorous? Are you kidding? I was in a new food world.
I already knew about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.
And exercise! I was a dancer. Wasn’t that enough? Nope, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work.
Native Americans have double the incidence of kidney disease as non-Native Americans. That’s why I’ve contacted kidney educators who are willing to go to the reservations to talk about screening and CKD education. All I have to do now is get permission from the reservations. I was surprised to discover writing my book What Is It and How Did I Get It? Early Stage Kidney Disease, maintaining a blog, Facebook page, and Twitter account of the same name is not enough for me for me to spread the word about CKD screening and education. I’m determined to change this since I feel so strongly that NO ONE should have this disease and not be aware of it.
Gail Rae-Garwood was shocked when she was diagnosed with kidney disease. She is determined to spread the word about testing and risk factors, especially within the Native American community. Check out her blog for more information.