Operation Crazy Straw Part Two: Delayed Reaction

“I don’t hate you,” I told my urologist when I return to his office for my stent removal.

“Not yet,” he smiled.

I don’t usually tell my doctors whether I do or don’t hate them, but my urologist warned me multiple times that I would probably hate him for placing a stent. Strangely, I had opposite experience, little to no discomfort for five days. At worst, I yelped when I bent over the straw poked me in the bladder. I took prednisone and Benadryl religiously to suppress any mast cell reactions.

I was most anxious for the grand finale: pulling the 8” crazy straw out of kidney via my pee hole without sedation. Fellow kidney stone suffers warned me that I might scream, but the pain would only last a few seconds. Before surgery, I told my doctor that I was most worried about the barbaric stent removal, not the pain itself, but a mast cell reaction to the pain.

I set my bright yellow EpiPen in front of my urologist, a subtle threat that I was to be taken seriously.

“You know how to use one of these, right?” he joked uneasily to the nurse.

“I’ll handle the EpiPen,” I asserted. “I premedicated an hour ago. Here’s my emergency protocol.”

I lay down on the exam table wondering if I should be more uncomfortable about my nakedness. Sometimes, it just feels good to lie down.

“So, how is work?” my doctor asked.

“Well…” I said, as I caught a glimmer in his eye and felt a sharp tug in my bladder that shot to my kidney. A confusing mix of nausea and relief rendered me silent as the plastic stent dragged slowly out of my kidney, ureter, and finally bladder. Yup, it definitely was over 8 inches.

“That was easy,” I said, sitting up bewildered.

At noon, I returned to work feeling like a badass with the urge to hula. I announced to my coworkers I had no pain for the first time in six months! Furthermore, I tolerated that crazy straw better than anyone! Better than a mother serving her kids milk! I updated my Facebook: “Stent removed. No anaphylaxis. No more pain!”

Around 2 pm, my badassery wore off and I needed a nap, so I drove home. Halfway through Despacito and my commute, I felt a sharp twinge in my ureter. The pain struck again and again, and I felt the prickly burn of hives erupting on my neck. By the time, I got home I was shaking in tears and I staggering to the emergency room. (Yes, I live next to a hospital. It’s weird and serendipitous.)

The pain in my ureter became so bad I prayed to lose consciousness. When my friend rushed in the door, I reached for her hand (a sure sign I’m in level 10 pain) only to realize I barely had the strength to grasp it. All of my muscles braced against the pain. I worried I would lose control of my bowels as I shook from exhaustion. I tried to muffle my sobs and slow my breathing to no avail. I would have rather given birth to twins. Naturally.

I believe I have (unwillingly) become an expert on the pain scale. MCAS can cause daily bone pain, neuropathy, cramping, and spasms. While I have not given birth to a child, I have birthed a 6mm kidney stone.

This was worse than passing any stone, the worst pain of my life. My CT scan showed right hydronephrosis and hydroureter. My mast cells had swelled my ureter shut and my kidney was backing up with urine. The nurse gave me IV Solumedrol, Benadryl, and Fentanyl. The Fentanyl allowed me to tolerate the pain until the Benadryl reduced the swelling (and hives all over my body).

With the pain and swelling under control, I went home to manage the reaction on my own with pills. BIG MISTAKE. About one hour later, I rebounded and blubbered my way back to the hospital on foot. (This is how rumors get started among watchful neighbors.) I knew I wasn’t going to die from my reaction, but for a few milliseconds I considered death better than the hell I was experiencing.

I learned two very painful mast cell lessons that day.

#1: Expect the unexpected.

Although I anticipated a reaction, the timing and intensity blindsided me. It would have been unsurprisingly if my mast cells had reacted to the surgical lasers or the stent. However, it’s incredibly rare (maybe unheard of) to react hours AFTER a ureteral stent is removed. Thank goodness I was close to a hospital.

#2: Do not feel silly for taking precautions. 

My anxiety about the stent removal was completely validated! In fact, I was not cautious enough! Retrospectively, I realized I let my Benadryl wear off right after the removal, because I felt okay. However, my mast cells needed continuous Benadryl.

So I asked to be admitted – my first hospitalization with mast cell disease.

To be continued…

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. Part two… coming soon..