kidney brain and other weird side effects

It’s time to talk about kidney brain and all the other weird side effects of kidney disease. Renal failure can be like a chameleon, constantly changing colors, or symptoms. Until you get that first elevated creatinine, it can disguise itself as any number of diseases. It also likes to pair up with other diseases such as diabetes, high blood pressure, thyroid, and many cancers.

In my twenty years of being diagnosed with renal disease, I never once felt any burning sensation or pain in the area of the kidneys. I slowly lost my sense of smell, but never got the metallic taste in my mouth until after I started dialysis. There were never any visible signs of fluid retention in my hands or feet, but  I carried it secretly, intra-cellularly, in the lungs and other organs, making it impossible to lose weight. Many people report severe itching, which is the parathyroid contribution to kidney disease. At my worst, I had a fine red rash over half my body, which burned like acid! Some people describe it as itching from the inside out. Another dialyzor recalls smelling cigarette smoke for the six months prior to starting dialysis.

As I mentioned in a previous post, I had severe asthma, and shortness of breath, long before I developed any renal symptoms. At the end of the day, it is more than likely this was  due more to kidney failure than lung problems. In the event of any breathing and/or lung issues, I urge you to check your kidneys, and often!

The brain fog develops slowly, along the lines of alzheimers, and you may not notice it until the end. I knew was becoming lethargic, but despite not sleeping well for many years, I still managed to accomplish most of what I wanted to do on a daily basis.

I travelled extensively, and while I wasn’t hiking Mt. Everest, I managed  a mile of zip lines in Mindo, Ecuador, a three hour horse trek into the mountains of Vilcabamba, Ecuador, and another one into the fjords of Iceland.

Just hanging out in Mindo, Ecuador

Just hanging out in Mindo, Ecuador

Vilcabamba, Ecuador

Vilcabamba, Ecuador

But at the end, it was honestly like looking through a fog. I couldn’t clear the cloudiness from my eyes, and I could no longer go up and down stairs. I was sitting more than standing, and about the most strenuous thing I could accomplish was a game of solitaire.  One reader called it At Dialysis Dementia, or KEPPRA! How perfect.

While I loved to cook, food no longer held any interest for me, and most meals I could barely manage a few bitefuls. I got most of my nourishment from a good bottle of wine!

But the thing I missed the most, and didn’t even realize it was gone, was my passion for life. I kept telling myself I’d figure out what I wanted to do with the rest of my life, tomorrow. I just never dreamed in a million years that when tomorrow came, it would be in the form of dialysis.

So, my friends, I stand before you, looking and feeling ten years younger, the kidney brain a thing of the past. As I talk to more and more dialyzers, many who have been on dialysis for twenty or thirty years, I keep developing a new found respect for these hearty people who, like myself, have embraced dialysis, and made it part of their lives.


At the 2015 American Dialysis Conference, in New Orleans, with Melissa and Henning Sondergaard

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