Summer, 2019

I walked into my physician’s office for my six month checkup not really expecting it to be any different than it had been for the past few years. Lose weight. Take your cholesterol meds. Stay on your blood pressure medication. I expected the instructions to be the same. Outside of my weight issue and the fact that my blood pressure – which I never had any problems with before – had suddenly shot up before the last visit, I was actually in pretty good health. I was beginning to lose weight, albeit rather slowly. I didn’t take drugs and I drank moderately at most. What could go wrong?

Everything went pretty much according to script.

Until we got to the end.

The physician began eyeing my chart results from the previous February with a bit more concern than usual. Something in the numbers caught his attention.

When he finally looked up from the results, he mentioned something about a high creatinine level that had him concerned. It was the first I remembered hearing of it. My first thought was “Ok, so he just prescribes me another medication that will bring down this creatinine stuff, and life goes on right?”

Well, not quite.

A Nephro-what?

I was referred to a nephrologist (a doctor who specializes in renal/kidney health) and my medication was modified, increasing my Lisinopril to 20 MG and prescribing 120 MG of Diltiazem in addition. A week or so later I was in the nephrologist’s office where I was dealt my first staggering blow. His initial diagnosis based on the lab history was acute kidney failure.

“Well, this is something I can reverse right?”, I asked.

Nope.

In some cases short term kidney injury can be reversed. But with the creatinine levels having only receded slightly from the initial reading, it was still too high at around 2.5. In my case it likely wasn’t going to get better. The question was, what caused it? Was it going to basically stay at the stage it was at or was the kidney function going to continue to decline leading to a follow up diagnosis of chronic kidney disease. I won’t spoil it for you just yet, but I bet you have a pretty good idea where this is headed.

The first order of business was to get an ultrasound done. This is to rule out causes such as potential tumors, enlarged prostate, and other visible (and fixable) conditions that would cause restriction of kidney function. If that didn’t lead to a good explanation, the next step would be the biopsy to pull tissue out of one of my kidneys and put it under a microscope to test it for any number of different diseases known to lead to kidney disease. The expectation at this point was that my failure was caused by high blood pressure. I didn’t have diabetes, and since I was recently dealing with high blood pressure it seemed like the obvious candidate for a cause. By far diabetes and high blood pressure are the two leading causes of kidney disease.

As it turns out it wouldn’t be quite that simple for me. I got the ultrasound done and it did not lead us to any better of an explanation. When I went back to see my nephrologist, I was hit not only the bad news that the ultrasound showed nothing (outside of the fact that my kidneys haven’t shrunk, which is good news), but that he was confirming that this was actually chronic kidney disease. To get the actual cause we were going to have to go forward with the biopsy.

This was the second body blow. By this time I had been able to do enough research to know that between acute kidney failure and chronic kidney disease, if you have to pick one, you want to have the former. You can potentially live with an incident of kidney failure in some situations without it getting progressively worse over time (outside of the normal organ wear and tear). In the case of CKD, your kidneys continue to decline over time. There are exceptions; people have been known to stay in stages 2 or 3 indefinitely and live otherwise healthy lives. But CKD by it’s nature is typically progressive and while the time it takes to reach end-stage varies with each patient, once you are diagnosed you really have to start planning for a life without your kidneys.

Ok, Get To The Point

So if you made it this far you’re probably wondering why I’m telling you all this. While a lot of what I write will be based on my journey with kidney disease, my goal is to use this as a platform to bring attention to this common but much overlooked illness. Part of this is my story, but ultimately this is the story of the kidney disease community. This will be a look at the the daily struggles of patients approaching or living with dialysis, those racing against time for a transplant and a medical science community on the verge of big advancements in the treatment – and eventual cure – of kidney disease.

In the short time I’ve been researching this disease, I’ve been shocked by how little mainstream attention it has received given just how many people are afflicted and how much of a drain it is on our society financially, medically, and emotionally. In spite of that there are also a lot of champions working on advancements that could very soon improve the quality of life for kidney disease patients. While a cure doesn’t seem close at hand yet, there are seeds of hope being planted that with enough research, attention, and funding could help us turn a corner in our goal of preventing and curing kidney disease. All this I hope to address in upcoming articles.

In the next article I’ll go into my biopsy results and the cause of my CKD, what my treatment plan is at the moment, and where it is likely headed. Also we will look at the current treatment options that we have now and some fascinating new developments that could become a game changer in the field of CKD treatment.

Discuss this post at Unfiltered – A Kidney Forum!

Next Article: What Is That Called Again?

Disclaimer: I can be considered a lot of things, but a medical professional is not one of them. The Internet is not a medical facility. Always make sure you consult with your physician before making any medical decisions.