Two abnormally sized kidneys sit on the face of a ticking clock.

What Happened When I Was Told I Have CKD

Last updated: May 2023

In October 2022, I had an appointment with a new doctor, a nephrologist. I was referred by my endocrinologist.

I had been there ten years before when I visited with a different nephrologist in the same practice. Dr. R1, decided to order a renal scan, and I was sent to nuclear medicine for the procedure. There I had the fluids inserted, the pictures taken, and the results read. Those results were not bad or good. I had two misshapen kidneys. The left was tiny and shouldering about 15% of the function. The right, however, was giant and was happily shouldering 85% of the daily function.

Dr. R1 sent me away with the following instructions. You may have issues someday, but you are good to go right now. We did not discuss the dangers of an oversized kidney or that having this increased the likelihood of severe kidney issues. I know now why he did not mention any of this. Because then, there was almost nothing he could do or recommend to improve my situation. That was my CKD picture in 2012.

Flash forward a few years

Flash forward to 2015, and I began discussing this misshapen kidneys with my urologist. He looked at the situation, did additional testing, and found my left kidney function was reduced to 8%.  He said it was functionally atrophied and advised we would do nothing until it caused an issue.

In 2022, it was causing issues. My left side hurt so bad it was almost unbearable. I spoke to my endocrinologist, who advised that I should have it removed if it was hurting. My cardiologist gave the same advice. So I told my urologist, and he ordered a removal procedure.

The removal went well. The left kidney was removed using laparoscopy with little issue, and the healing was simple. But then my numbers (the little thing on paper we live by) started to change. First, it was creatinine, the number I have watched more than any other, began to rise, then like a shot on the blind side, protein.

My endo (Certified Diabetes Educator CDE) mentioned it. Then I discussed it with my urologist, who suggested visiting a kidney specialist might be a good idea. So I called for an appointment.

Dr. R1 was still practicing, though he was not accepting new patients, and I would be a new patient, and he was not accepting new patients. But a new nephrologist was on staff, and I could see him immediately. I jumped at the chance. Dr. R2 gave me the news. I had skipped from likely CKD (stage 2) to stage 3a. Darn, I did not even get the medal.

Not a surprise, yet emotional

It was not a surprise. I had been watching the numbers. By this time, I knew that having an oversized kidney was not good. I knew, of course, that the small kidney had atrophied, and I knew I had type 1 diabetes for 48 years. So yeah, it made sense. As I recall it, Sheryl and I went to the car and had a good cry. Then we moved on.

Still, it was like a thousand stinging pins hit me all at once. But what to do? Not much. That was the day I stopped adding salt to my diet. I had my many water pills reshuffled. Take these at night, this in the morning, and as a bonus, I immediately gained ten pounds. I know it sounds crazy right? The water pills were suppressing my water retention too well, so now I must again lose those ten pounds that were so tough to take off in the first place.

In some ways, it was so much nicer not to have to worry about some future thing. I already have three chronic conditions, and adding CKD was not my idea of a good time. On the other hand, I have had type 1 diabetes for more than 48 years. I made it far longer than I expected when I was diagnosed in 1974. So I get to look on the positive side. I am here today. 

Yes, I have CKD; things could go badly quickly, but you know I still get to walk in the park with Sheryl. Now that is a fortunate man.

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