Operation Crazy Straw

I made the mistake of googling my procedure.

When you hear “stent,” what comes to mind?

Maybe a tiny coil, smaller than a thimble? Maybe a micro sized umbrella, like a cocktail decoration for a fairy garden?

Okay, so maybe I didn’t have a reasonable understanding of stents going into this, but I’m pretty sure my doctor didn’t elaborate on purpose.

Because Google revealed ureteral stents are over EIGHT INCHES LONG with curlicues at each end.

In other words, I was electing to have a crazy straw shoved all the way up my pee tube and into my kidney for FIVE DAYS.

I was equally worried about mast cell reactions to the surgery and stent. This was my first procedure since my mast cell disease diagnosis and I had no idea how I would react to some medications such as anesthesia.

However, I needed the procedure. My kidney stones were aggravating my mast cells. My kidney was constantly aching and the pain was spurring low grade fevers.

I shared all my fears with my surgeon. He listened to me, and agreed to follow the pre-op and emergency mast cell disease protocol. He tried to reassure me.

“I will leave a string, so if the stent become unbearable, you can always pull it out,” he said smiling. “Like a tampon!”

This is when I realized we would never quite be on the same page. I’m pretty sure ripping out my own eight-inch stent would be a ticket to the Anaphylaxis Express. I also questioned his familiarity with tampons. Again, I am not a medical professional, but there is a significant difference between a pee tube and a baby tunnel.

*****

My first sentence out of the operating room was, “Why did you wake me up? I was in Fiji.”

And then, “I need to pee.”

This is less curious when you realize I can only drink Fiji water.

The nurse assured me that I didn’t actually have to pee. They had drain my bladder with a catheter and I was feeling irritation from the procedure. After a quick assessment, I realized I felt quite good! My fever and kidney pain was gone! I proceeded to chat with everyone with the recovery room that was conscious. I have a suspicion that my mast cells loved the sedative.

My surgeon reported that he removed 5-10 stones, most of which were too big to pass! I basically had a quarry in my kidney!

Everyone told me the stent would be awful. They warned me that I would scream when I peed. So I emotionally prepared for death. Instead, I burst out of the bathroom, “I PEED! IT WAS FINE! I CAN DO THIS!”

The remainder of the day was awesome. For the first time in months, I had no pain. I bounced around my condo, confusing and concerning my caretaker. Thanks to prednisone, I bid her adieu at 10 pm and pulled all-night creative extravaganza. My poodle pulled a blanket over his head.

Unfortunately, the story doesn’t end here. After all, it’s a mast cell story. Read part two.

A tale of two kidneys

You know how in movies sometimes a devil and angel sit on the protagonist’s shoulders? I, too, have good and evil tempting me these days. Except my devil and angel are my kidneys.

My bad kidney, the one that hoards stones, chides me every waking hour, “You can’t work; you’re in pain. Go back to bed and never drink water again.”

Good Kidney reassures me, “Don’t worry, you still have me.”

I tell Good Kidney that doesn’t really help the pain. Or the fact that I need surgery and a stent shoved up my pee hole.

Good Kidney retorts, “At least, you don’t have a penis.”

I can’t argue with that. So, I carry on and I ignore Bad Kidney.

However, on Monday, Good Kidney suddenly whimpered, “I don’t feel so good. We should go to the ER.”

I considered ignoring both kidneys, but the internet told me that doesn’t usually turn out well. By the time I got to the ER, Good Kidney was crying, Bad Kidney was screaming, and I was asking for a wheelchair.

The nurse offered pain medication, and I initially refused for fear of a mast cell reaction. However, Bad Kidney was insistent, “Pain meds! Pain meds! Now, now, now!”

So the nurse came back with Diluadid. I’ve had it before, also for kidney stones, but I couldn’t remember how it felt. (That’s probably because I was passing a 5mm stone and blacked out.) As soon as the nurse pushed the medicine, pressure rushed through my body, filling me like an overinflated balloon.

I braced for anaphylaxis, certain my mast cells had been activated. Nothing. I am led to believe my mast cells are Team Bad Kidney.

I tried to relax, despite the overwhelming desire to burst out of my skin. I took a deep breath. I wondered if this is how gingerbread men feel when they are cut with a cookie cutter? Do they mourn their leftover body on the cookie sheet?

Are we all one big cookie?

The medication wasn’t worth the hangover. I could still feel Bad Kidney, although it was more tolerable. The doctor recommended surgery sooner. Feeling defeated, I left the ER, made cookies (?!), and went to bed.

My mast cells have made a nest

Over the past week, I’ve been a dizzy, nauseous, painful mess. A relentless ache over my right kidney kept telling me I was dying, but I’ve felt this before and my CT scan was normal.

By the time I asked for an appointment, my emotions were as unstable as my mast cells. My specialist kindly lectured me on the importance of pain management. Pain can amplify allergic reactions. I tried to argue with her at first, but then I almost projectile vomited in her lap.

This time, my ultrasound was normal. Blood and urine were also normal. I was unsurprised, yet reassured to know I was not pregnant with what felt like Rosemary’s baby. All signs pointed to my mast cells as the culprits.

“Some MCAS patients call it a nest,” my specialist said.

I quickly went through the five stages of grief.

  1. This is not real life.
  2. I just wanted a damn kidney infection and some antibiotics. Why can’t I have normal problems that normal people can understand?!
  3. Maybe it would be easier to be pregnant with the spawn of the devil. At least then, it eventually comes out? Is that still a possibility?
  4. I’m never going to feel joy again, because all I can feel is this nest.
  5. I have a nest in my abdomen. It’s a thing.

Basically, I have a bunch of angry mast cells congregating on my right side and using my kidney as a piñata. Last time, I endured the pain for a week and half, and then it resolved on its own. I try not to think about living with these flares for rest of my life. As you can imagine, there’s no real treatment for a nest.

So today, I’m resting, taking pain pills, and lathering my back with Benadryl cream. And telling jokes to my nest.

Why didn’t the mast cell get invited to the birthday party?

 He’s too mean.

 

Get it… his-ta-mine.

Happy first birthday, kidney stone

Yes, that’s right. I am celebrating the one year anniversary of passing my first kidney stone. Why would I want to celebrate such an excruciating memory?

Because it taught me I’m a badass.

Maybe a naïve badass. Initially, I tried to meditate through the pain, but couldn’t shake the fear that maybe one of my organs was about to explode. So I went to the ER and was diagnosed with a 5mm stone and a few smaller ones. Begrudgingly, I began pain medication around the clock. I started to feel pretty good. So naturally, I flew to Nashville for a work conference.

And then that f’er decided to move. Good thing “kidney stone” is free ride to the hospital from strangers. (“Oh, bless your soul, my daddy used to get those. A grown man, and he’d be on the floor crying.”)

To say I was a badass does not also mean I was a peach throughout the experience. I quickly surpassed the ugly cry. Every time the pain medication wore off, I became a werewolf, growling and clawing in my hospital bed, restrained only by the IV that became my lifeline. I was admitted for surgery, but sure enough I passed that f’er as the sun rose.

And I didn’t even get a gold star. Or card. As if nothing happened, I had to submit a summary of the work conference that I half missed.

Our society struggles to recognize the sour milestones of our lives. I celebrated my MCAS diagnosis with donuts. And it made everyone uncomfortable. One guy even tried to put a donut back once he realized the occasion. Although bittersweet, my diagnosis was a more memorable and life-changing milestone than any of my birthdays.

The internet says passing a kidney stone can be more painful than child birth. I abandoned the 1-10 pain scale long ago, but find the kidney stone pain comparison very useful nowadays. Instant credibility.

So today I’m celebrating that little stone that now resides in a laboratory in Tennessee. And the absence of any siblings since. Sometimes pain is inevitable and there is nothing to do but endure it. With MCAS, pain is a daily visitor. I suggest you celebrate when you escape it.