I am 45 years old and this year I was diagnosed with chronic kidney disease.
Finding Out About My Kidneys
In May of this year, I went in for my annual doctor’s appointment. I will admit, I didn’t really want to go but I did. And I am so glad I did. I had some blood work done, and it came back with come concerning results.
I was referred to several different specialists, including a urologist. One of the concerns was my creatinine levels and my eGFR number. For my age and gender, the average for those numbers is a creatinine level of .5-1.1, and an eGFR of 99. My numbers were a creatinine level of 1.7, and an eGFR of 34. This was not good news.
I looked back at my older labs and was a little shocked to see that my numbers had been normal in 2019, but started to fall in 2020. But I never really paid close attention to them and they weren’t “bad” enough for the doctor to be concerned. They were now what is concerned Kidney Disease 3b. I have learned from spending time in Facebook groups for people with CKD that most people don’t get diagnosed until 3a or 3b.
How I Was Diagnosed With Chronic Kidney Disease
I am not totally sure why this. But it seems to be what happens.
So although I hadn’t been officially diagnosed yet, I knew what was going on. I just didn’t know why. Kidney disease wasn’t something I ever thought about. It didn’t seem to run in our family.
I was sent to have an ultrasound on my kidneys, then a CT scan. I also went to my first urologist appointment. It was there they explained that their job was to figure out if my bladder was the reason for the decrease in my kidney function. She said one of the things could be a blockage in my bladder.
Ureteral Obstruction
Due to the results of the CT scan I was scheduled for an exploratory surgery where they would be able to see what was going on with my bladder and if there was a blockage. I had this in August and it was explained to me that if they did find a blockage they would insert two stints to help temporarily correct things. But they wouldn’t know until after the surgery started.
So the first thing I asked when I woke up was, “Do I have stints…?” And the answer was yes. That meant that they did in fact find a blockage, which was good news because it meant that we probably found a cause for the reduced kidney function.
I have what is called a ureteral obstruction on both sides, but one is worse than the other. The tubes, called ureters, carry the urine from the kidneys to the bladder. Picture a straw that has a kink in it, the liquid doesn’t flow like it should and so the urine is backing up within the kidneys causing the decrease in function.
Surgery to Fix It
I will be having a surgery next month to fix it. They will cut out the obstructed area of the tube and reattach it, almost like what do if you have a hole in a hose and need to repair it. This will hopefully stop the problems I am having with losing kidney function.
Once that is done, I can truly focus on the reality of now having kidney disease. Unfortunately just because they can fix the obstruction doesn’t mean my kidneys will go back to normal. Now, my eGFR can go up a little bit and I can hopefully stay in that range for decades. My doctor has hope that I can stay away from stage 5.
It’s humbling to know that I have something going on that could be terminal. But, I also know that I can most likely live a long life even with kidney disease. I have had to change my diet a bit which is hard, and I am not quite where I want to be yet. That is a journey in and of itself.
Meeting With the Nephrologist
I did meet with a nephrologist and have been officially diagnosed with chronic kidney disease. That was super helpful and was able to ask some question and get a lot of information. And going to see him really helped me understand how real this all was.
I don’t know what the future holds and just trying to take it day by day and appointment by appointments. Seeing so many different doctors, having so much blood being taken, and even having multiple surgeries is all really new to me. I sometimes have to take a deep breath, say some prayers, and hope for the very best.
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