CKD Stage 2, No known cause

Your story is like mine. No family history, no known cause, except UTIs, and physicians ruled out that anti-biotic as a probable cause. I have researched constantly and I still feel as if I am wandering in the wilderness. as far as the medical profession and my condition.
No family history,
I had to fight to get care for what was originally diagnosed as CKD 3 (a or b). Now it seems I am really at Stage 2, Creatine 9, GFR 64. But six months ago, when this was first casually mentioned, my hospital records showed me as having a GFR of 50. (!) And, the advice was that I did not have to "do" anything. I have become knowledgeable about numbers, diet, and endless details about all aspects of this disease, as well as medical research, and diet. Especially diet.

I have researched and purchased several books and regularly visit a couple of websites. One book I bought is by Shelley Manning, altho I keep confusing her with Mary Shelley, who wrote Dracula.

Immediately on learning, by accident, that I was Stage 3 (remember I actually sort of at Stage 2) I began to read up and learn all I could.

Physicians tell you that at Stage 3, you do not need to change a thing. A crusade needs to form around telling people to ignore their doctors' advice and begin to make changes immediately. That is if you actually HAVE a kidney specialist; I had to fight my way to that as well, and after a brief 15-minute chat, I changed to another kidney specialist who actually sat down and explained it to me. Still, she told me not to worry about doing anything at this stage. Again, I think it is my age...

I receive vague assurances, no one has given me advice about diet, I changed kidney doctors because of lack of interest, and forced myself onto the hospital nutritionist. Meanwhile, I have researched everything I could find and followed all the tendrils that lead to and from CKD. God help the person who is not assertive and diligent about a CKD diagnosis.

Looking back, the most stunning part is the continued response from medical professionals that I do not have to "do" anything. Partly, I believe, this is because I am older, so since CKD is slow-moving, and I am supposed to die before I will approach the dialysis stage. Well, that was never going to be an option for me!

Get acquainted with all the kidney advice and dietary knowledge you can find. Change your diet, exercise, work toward lowering your GFR and other numbers. Haunt the web. Read comments and advice on sites like this one. Knowledge is power.

And, by the way, people with Kidney Disease do not die from Kidney Disease. They die from heart attacks. Aim for moderate exercise every day if possible, for 30 minutes. I am thin anyway, and I hate exercising, but I am trying to become diligent.

My take-away? Begin on day one to change your diet and fight.

Ginger, thank you for your response. I actually did read a review of those studies, but the one you sent had more complete information. I have considered from that article, I may have some kidney damage from a marathon I trained for in 2012. There was an episode where my ankles were swollen, although after it went away pretty quickly, I wrote it off. I no longer run distances like that. I told myself about two years ago I’m going to keep it to no more than a 10K. So my running is about 3-5 miles each time, 3-5 days a week for enjoyment and good health. I also added yoga once a week. I don’t like strength training very much:( Right now with winter it’s about 3 days a week, as weather permits, I’ll increase it to 4-5 days a week. So I agree that could be a cause. Maybe I’ve had this mild kidney damage since 2012 and it’s very stable now. Given I have no other risk factors. My neph, basically says that it’s mild and stable. The number of miles I run right now does not seem to correlate to the lab results. I also tried a different lab one time, from the advice of a Urologist friend, who didn’t tell me what you did, but clearly he understands different labs sometimes produce different results. All my numbers were slightly better from that lab, but still high creatinine.

I appreciate your comments a lot. And thanks for the better article. Maybe the running is the cause. 16-20 mile training runs, over and over again is brutal. Not sure I will ever know for sure. Wish I had past lab results to compare, but I haven’t been to an MD since just before 2012 and I recently found out all those decade old records are purged. That’s unfortunate.

Your story is like mine. No family history, no known cause, except UTIs, and physicians ruled out that anti-biotic as a probable cause. I have researched constantly and I still feel as if I am wandering in the wilderness. as far as the medical profession and my condition.
No family history,
I had to fight to get care for what was originally diagnosed as CKD 3 (a or b). Now it seems I am really at Stage 2, Creatine 9, GFR 64. But six months ago, when this was first casually mentioned, my hospital records showed me as having a GFR of 50. (!) And, the advice was that I did not have to "do" anything. I have become knowledgeable about numbers, diet, and endless details about all aspects of this disease, as well as medical research, and diet. Especially diet.

I have researched and purchased several books and regularly visit a couple of websites. One book I bought is by Shelley Manning, altho I keep confusing her with Mary Shelley, who wrote Dracula.

Immediately on learning, by accident, that I was Stage 3 (remember I actually sort of at Stage 2) I began to read up and learn all I could.

Physicians tell you that at Stage 3, you do not need to change a thing. A crusade needs to form around telling people to ignore their doctors' advice and begin to make changes immediately. That is if you actually HAVE a kidney specialist; I had to fight my way to that as well, and after a brief 15-minute chat, I changed to another kidney specialist who actually sat down and explained it to me. Still, she told me not to worry about doing anything at this stage. Again, I think it is my age...

I receive vague assurances, no one has given me advice about diet, I changed kidney doctors because of lack of interest, and forced myself onto the hospital nutritionist. Meanwhile, I have researched everything I could find and followed all the tendrils that lead to and from CKD. God help the person who is not assertive and diligent about a CKD diagnosis.

Looking back, the most stunning part is the continued response from medical professionals that I do not have to "do" anything. Partly, I believe, this is because I am older, so since CKD is slow-moving, and I am supposed to die before I will approach the dialysis stage. Well, that was never going to be an option for me!

Get acquainted with all the kidney advice and dietary knowledge you can find. Change your diet, exercise, work toward lowering your GFR and other numbers. Haunt the web. Read comments and advice on sites like this one. Knowledge is power.

And, by the way, people with Kidney Disease do not die from Kidney Disease. They die from heart attacks. Aim for moderate exercise every day if possible, for 30 minutes. I am thin anyway, and I hate exercising, but I am trying to become diligent.

My take-away? Begin on day one to change your diet and fight.

@wkidney You'll read from others here, and I echo them, that each person's journey is different, even when they are similar. It is generally understood that kidney disorders are slow-moving, and our bodies learn to adapt to the small changes as we go along. Think of if as balancing a globe or sphere, where everything works together. As you move it slightly, there are accommodations made elsewhere, so you simply do not notice it. Kidneys are alot like that! The medical community will often tell you there is no need to address lifestyle changes in Stage 3.

Way back in 2015, when I was diagnosed with my ultra-rare kidney issue, that's what they told me, too. But I decided to upgrade my lifestyle, my diet, my approach to life and make it all the best I could. My last lab work showed my eGFR at 19%, up from a low of 14%. I am monitored each month. While they are certain I will be on dialysis before too long, I will campaign to hold off as long as possible! At age 69, dialysis will be part of the rest of my life once it is started, as I cannot be transplanted. But I intend to stick around for a long time, off dialysis as long as possible ;))

Put your running shoes on, run a mile for me! And, please, let me know if I can help in any way to relieve your concern.
Ginger

@wkidney You'll read from others here, and I echo them, that each person's journey is different, even when they are similar. It is generally understood that kidney disorders are slow-moving, and our bodies learn to adapt to the small changes as we go along. Think of if as balancing a globe or sphere, where everything works together. As you move it slightly, there are accommodations made elsewhere, so you simply do not notice it. Kidneys are alot like that! The medical community will often tell you there is no need to address lifestyle changes in Stage 3.

Way back in 2015, when I was diagnosed with my ultra-rare kidney issue, that's what they told me, too. But I decided to upgrade my lifestyle, my diet, my approach to life and make it all the best I could. My last lab work showed my eGFR at 19%, up from a low of 14%. I am monitored each month. While they are certain I will be on dialysis before too long, I will campaign to hold off as long as possible! At age 69, dialysis will be part of the rest of my life once it is started, as I cannot be transplanted. But I intend to stick around for a long time, off dialysis as long as possible ;))

Put your running shoes on, run a mile for me! And, please, let me know if I can help in any way to relieve your concern.
Ginger