Surviving My Kidneys’ Sudden Betrayal

The harsh lights hurt my eyes as I enter the hospital emergency room on a gurney. I’ve tried to convince everyone I’m not having a seizure, and despite speaking gibberish, I’ve succeeded. They give me an IV bag, what I fondly call banana bags, as they’re full of electrolytes to get your body back in sync while giving you fluids. I’ve seen people use them to get over hangovers on TV.

I never knew being hospitalized for dehydration was more than trying to be PC about why a celebrity is suddenly hospitalized. It’s the same with exhaustion, and while I’ve never been hospitalized for that, I have been hospitalized for something supposedly caused by overdoing it and exhausting myself. I want proof.

The doctor comes by and says they’re waiting on labs, but they’ve ruled out the biggies. Since I’m better now that I’ve been hydrated, I’m good to go. I argue they still need to figure out what’s going on with my stomach. Otherwise, I’ll be back soon. Then, realizing I don’t want to be admitted, I stop arguing. I’ve scheduled outpatient care. I’m ready. Then my labs come back, and they’re game changers. I’m in kidney failure. How? What the-? I can pee.

To prepare you, this was an obsession while trying to accept I was in kidney failure and during months of treatment, including dialysis because I never stopped peeing. It wasn’t difficult. It wasn’t a different color. There was no blood, it didn’t hurt, and I didn’t pee any less (they measured). My pee was perfection. Okay, I’ll try to stop discussing my urine.

So many facts backed up my denial. I lacked the risk factors. No blood pressure or blood sugar issues (yes, the shock), I didn’t smoke, I didn’t check a single box. I didn’t have a family history of kidney problems. Honestly, I was the poster child for kidney health until they failed.

Regarding signs, my symptoms were only stomach-related: stomach pain, a feeling of always being full, and nausea and vomiting. Ironically, my appetite was the same. Yes, I was always tired with spells of confusion and progressive weakness, but who wouldn’t be if they could never eat, or even drink most things, for weeks? Something was wrong, but it had nothing to do with my kidneys. Blame my stomach.

Also, I could pee. Sorry, but this was a biggie those first few weeks. Especially since doctors were measuring it, looking at its color – they were obsessed with it, too. This added to my obsession. How could my kidneys be kaput?

I needed to get over that fast because my kidneys kept taking deep dives every passing day, as my doctors told me each morning. I kept thinking: My kidneys are done. Why do you keep telling me they’re worse than done? Isn’t “done” supposed to be the bottom floor? But no. My doctors loved to go over how much worse my kidneys were getting. (Despite never losing the ability to pee.)

These reports were my crash course in all things kidney-related. There were several things. (Don’t worry, I won’t bore you. I’ll do that some other time. Probably tomorrow.) I came to realize kidneys are so much more than allowing you to urinate; they are like the body’s factories. I pictured a conveyor belt with piles of ground beef being “worked on” by cows. Yes, it’s not a pretty picture, and why would cows be the ones sorting beef? I never claimed my mind made sense, especially regarding imagery, even though there’s always imagery. Kidneys filter – almost everything.

Not only your body’s chemistries, many of which I didn’t realize we have in our bodies (Magnesium? In the body?), which, if not filtered, makes everything a bit of muck. They also impact things like fluid retention, which goes back to the lungs and the heart – it’s a whole thing. I guess they mean “vital” when people refer to kidneys as “vital organs.” You learn something every day.

I needed to learn a lot in one day, except it took two, or more like one and a half. I’m including the day I was handed the news, which I deem “D-Day,” because it felt like the end of the world, in some ways it was. Besides, several others thought it was, which made me think it was rather than just feel it. Bloody (I wanted to use a different word), peer pressure.

Kidneys matter, and with my kidneys AWOL, I had to go on dialysis, which is evil. In all caps, but I’ll spare you the caps. I ended up on chemo, steroids, all kinds of therapies, plasma exchanges, and blood transfusions on top of dialysis while managing other new conditions. (I was right about my stomach. There was an issue, gastroparesis, which is where the stomach doesn’t empty, causing pain, fullness, nausea, and vomiting. Ironically, its prescribed medication is the same anti-nausea medication they give chemo patients.)

It all happened within a week, and then it was all simultaneous for months. Managing symptoms was complicated because no one knew if it was my kidneys, medications and treatments, dialysis, or my gastroparesis that were causing them. Exhaustion, brain fog, pain all over, the inability to keep things down, and always in the bathroom – every source could have been responsible for them. With all those factors happening at once, can you venture a guess? Since I can’t, probably not. It doesn’t matter; it’s just that things were involved, more involved than kidneys are.

I gained nearly 100 pounds of fluid within that first week and couldn’t shed it. Water weight is like carrying around gallons of water, which is much heavier than fat. (I speak from experience from the inability to move from spinal tumors, complicated fractures of the feet and ankles, etc. I would gain 20-40 pounds depending on what it was and how long I couldn’t be active; water is much heavier.) I’d be anemic, then clot off machines, my central line was having issues, I needed a transplant and prepared to get on the list, which is like applying for college, and you need to successfully pass what seems like every procedure in the book. Once my kidneys recovered, I remained on Cytoxan, other anti-cancer drugs, and steroids.

It was a celebration, but not immediately. People didn’t understand; I should have been cheering. It had been the end of the world, and suddenly it wasn’t. It wasn’t because I was still taking all those nasty drugs that made my life hell or blood draws twice a week. I think some doctors got it. Those blood draws, the appointments, the drugs – I was treated gentler than I had before. We, not others, were holding our breath. Once you can finally let it out, you still need to get your head right.

You lived death. You know “the end of the world,” and that touches you. You weren’t at the cliff, but one foot off. Now, you were just at the edge, looking down at where you had been. Life is different. Like finding identity after strokes, after surviving other illnesses, or avoiding catastrophic injuries after a horrific accident – you need to reestablish different things. Living death, you need to reestablish living life. What was intuitive became counterintuitive, and you need to relearn.

Thirteen months. That’s how long it took me after my kidneys recovered, and only after a few pivots, accomplishments, and experiences. I think it would have taken longer without them, but I got there. As a survivor of kidney failure, I can say without a doubt that kidneys matter. Dialysis is hell. Fistulas are moody. But the survival part, once you get your head there, that “end of the world” changes to no longer bearing the weight of it. You get to be light, and that’s pretty sweet.