My mast cells put me in the hospital

“I’m scared and alone and I need you to tell me everything will be okay,” I texted my best friend.

Thirty minutes ago, I was insisting to be admitted. After two rounds of mast cell induced ureteral obstruction, I refused to experience the worst pain of my life again. Pills weren’t enough; I needed continuous IV medications, I told the ER doctor. So they admitted me to the neurology floor.

But maybe this was a bad idea? I looked down at my IV and then the door. I can outrun them, right?

I had been admitted to the hospital once before. Similarly, it was midnight, I was alone, and my ureter was obstructed (that time by a 6mm kidney stone). In fact, I was in another state attending a work conference. My mom offered to fly down, but I declined. I found solace in the quiet room.

So why was I terrified of hospitalization this time?

Because this time I knew I had mast cell disease. This time, I knew my doctors would not know how to help me. This time, I needed to educate and convince my care team to listen to me. This time, I knew any treatment was a gamble.

The admission process made me feel like a criminal entering jail. The hallways were empty and the rooms were dark. The head nurse searched my belongings and confiscated my pill bottles. I pleaded to keep my medications, explaining I had to use specific manufacturers or else I risked another reaction. Why do they need to lock up my antihistamines? If they don’t trust me with my own medications, how will they trust me about treating my disease? I began to cry. The nurse promised to deliver my morning doses on time.

Next came the doctor, a neurologist. He asked me what pain medications I could tolerate. I replied oxycodone and fentanyl. He told me they don’t administer fentanyl on the 7th floor. He suggested morphine and I began to hyperventilate. Why am I on this floor if they can’t give me the medication I might need?! I told him morphine will kill me and fentanyl is the only medication for extreme pain that I am sure is safe. I had tried other pain medications that week and lost my vision for two days. In the ER, two doses of fentanyl only reduced my pain to level 8 on the pain scale.

The doctor agreed to continuous IV Benadryl and oxycodone (luckily my pain was more manageable at this point). The nurse left the room and my friend who brought me to the ER said goodbye. I looked out the window to regain my bearings, but my city was unrecognizable in the darkness, and began to lose my shit.

You should know, mast cell reactions also can induce a sense of doom. The doom fogs all logic and invites fear to fill every thought. This chorus of fears echoed in my head:

  • I am going to die.
  • They are going to deny me my medicine and I am going to suffer. And then I am going to die.
  • I am going survive, but my hospital bills will be unsurmountable and I will lose my home. I will be homeless. And then I will die.
  • I am never going to have children and I am going to die alone even if it takes me awhile to die.
  • I am never going to feel joy again.

The nurse returned and asked me if I needed anything.

“I’m scared,” I squeaked.

The nurse walked over to my bedside and I began babbling how scary mast cell disease can be. She said she had never heard of MCAS, so I explained my triggers and daily challenges. The nurse listened patiently for over fifteen minutes and I felt better.

As she left the room, she said, “I won’t put the bed alarm on.” Way to ruin a moment.

I didn’t sleep at all. Pain medicine and Benadryl give me insomnia. I took black and white selfies of my tear-stained face and wrote lines for a melodrama I creatively titled “Girl in the Hospital.”

My anxiety subsided as the sun rose. I hadn’t had a reaction. I didn’t need Fentanyl. I hadn’t ripped out my IV and ran. I survived my night in my hospital with mast cell disease.

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..

I’m allergic to pain

For the last two weeks, while waiting for kidney surgery, I’ve been stuck in a lose-lose situation. I’m allergic to pain and I’m allergic to my pain pills.

When I say “I’m allergic to pain,” almost no one takes me seriously. After all, isn’t everybody averse to pain? I have to explain to my nurses that pain can trigger my mast cells to release loads of chemicals and cause severe, sometimes life-threatening, reactions. When severe pain strikes, my whole body swells and burns. In other words, adequate pain management is essential to avoid MCAS complications.

So pain pills seem like an easy answer, right? Wrong. Mast cells generally hate pain medication. I am one of the lucky few that can tolerate NSAIDs and some opioids. However, this week I wasn’t so lucky.

An ER doctor prescribed me a new narcotic to manage the kidney stone pain. I was both grateful and reluctant. I am always scared to take a new medication, but the only path to relief is trial and error. My reluctance was validated 24 hours after taking the first dose with a severe, two-day MCAS reaction.

My reactions to medications are distinct from other MCAS reactions. In addition to typical symptoms, a migraine with aura renders me bed bound for 1-2 days as the medication leaves my body. I take the maximize amount of Benadryl in order to keep food, fluids, and medication down.

So basically, I traded my pain for vertigo and vision loss. I think I prefer pain after realizing how heavily I rely on screens for comfort. Social media is a great source of support, but in this instance, it was also my enemy. I also tried blogging, but only managed a few desperate sentences before I vomited and proclaimed my life was over. The future seems bleak in an MCAS flare.

Despite knowledge and planning, I often feel like I can’t win at all with MCAS. Sometimes this disease is overwhelmingly unfair. But this too will pass, right? Like a 7mm, laser-blasted kidney stone, right?

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.

A sad day for Minnesota mast cells

Today, I lose my mast cell care team. My MCAS specialist is moving across the country. This is upsetting, but not unexpected. I knew I was extremely lucky to have easy access to (arguably) the world’s best MCAS doctor. I was grateful for every minute of care I received. He truly saved my life.

This is what I did not expect:
  • The university did not notify me, cancel my appointments, refill my prescriptions, or recommend new doctors until eight days ago – after I contacted them. They knew my doctor was leaving in May.
  • I found out on Facebook that my physician assistant, who has treated me for two years and has a valuable understanding of MCAS, is no longer allowed to see me, because…
  • The university will no longer treat MCAS.
I also did not expect:
  • Fellow MCAS patients to call Minnesota MCAS patients “whiners” for sharing their concerns about losing their care.
  • Fellow MCAS patients to accuse me of “doctor bashing” for expressing my outrage at the university’s mismanagement.

Amidst this turmoil, my kidney pain continued to gnaw at my body. I called the university, almost in tears, asking where I was supposed to get help. They recommended two allergists. I asked if they were kidding. I told them I’ll likely end up in the ER. So they offered me a final appointment with my MCAS doctor the following day.

My doctor and I discussed my pain, my kidney stones, and the possibility of kidney disease. I was stunned. On one hand, MCAS may be destroying my organs, and on the other, the university doesn’t believe my disease is serious enough to provide continuity of care. My doctor recommended I follow up with a urologist about surgery.

And then we said goodbye. I tried to maintain my professional composure while expressing my utter gratitude. I told him I am excited for him to advance MCAS education and research. His final notes in my chart read, “I thanked her for the privilege of having been involved in her care, and she thanked me for the care I’ve provided.”

For now, I am putting the turmoil aside. My kidney demands my full attention. I’m preparing for a painful surgery, gathering documents and praying the doctors will adhere to the mast cell protocol.

“What’s the disease called?” my new urologist asked.

“Mast cell activation syndrome,” I said slowly, as he wrote it down.

Doodling is easy, right?

Lately, I’ve found comfort and inspiration in doodles. These are my favorites on Twitter:

After finishing a delightful Sarah’s Scribbles book, I decided doodling would become my new hobby. Doodling will give me joy and purpose! I will spread laughter and cheer!

So I watched a few YouTube videos on Adobe Illustrator. I can totally do this!

I realized I could make an amazing infographic to help explain The Histamine Bucket metaphor for mast cell disease. I’ll doodle an infographic that is so informative that everyone in the world will understand MCAS!

I opened my laptop and got to work. I love new projects!

A hour passed. THIS PROGRAM DOESN’T MAKE ANY SENSE!

 The result:

First doodle

I don’t think I’ll be educating the world about MCAS by doodles any time soon. That squiggle in the upper left is just spite.

But I didn’t give up. Because failing at doodling is embarrassing.

I figured out how to use the shape tool, but only the shape tool. I am a brilliant shape wizard!

The result:

Poodle doodle

That’s actually a fairly cute poodle. Unless you have a phobia of poodle and spider crossbreeds. 

 My quest for a new hobby continues.