More mast cell grievances from Minnesota

My kidney still hurts. Removing the stones relieved the severe pain, but my mast cells are still spiteful from the surgery. I asked my urologist if I could try a mast cell stabilizer that targets the urinary tract. My hypothesis is it would decrease my kidney and ureter inflammation and consequently, I would collect less stones. My urologist said he hasn’t read any research supporting my claims.

Of course not. I taught him almost everything he knows about MCAS. Furthermore, I AM THE RESEARCH. Literally, I am a MCAS research participant. Am I supposed to jeopardize my body while I wait years for research to be published?

He asked me if anyone was managing my MCAS, which is the Minnesota way of telling me to seek help elsewhere. No, no one wants to manage my MCAS since my specialist left the state.

And then my urologist told me to piss off.

Okay, he actually told me to complete a 24-hour urine analysis. Another repeat test, another waste of time.

My desperation compounded when I learned Selena Gomez got a kidney transplant. If Selena, a multi-platinum singer, can’t save her kidney, I fear mine is also doomed.

Additionally, Selena’s friend gave her the kidney. I don’t even know how to ask my friends to bring me dinner. So doomed.

Find a new doctor, one might suggest. Unfortunately, the MCAS situation in Minnesota has gotten worse. As you may recall, the university stopped treating MCAS patients after my specialist left. The university recommended three doctors in other networks. Since then, all three doctors have closed their doors to mast cell patients. That sounds horrendous until you hear Mayo Clinic also refuses to see new MCAS patients. Apparently, Mayo Clinic is currently considering if they will see legitimate MCAS patients. Whatever that means.

Yesterday, I received a $500 hospital bill and a letter from the university, which will no longer treat me, requesting a donation to support its medical research. It’s a miracle I did not spontaneously combust.

Hospitals make me sick

I have a love-hate relationship with hospitals. While I depend on hospitals to survive my mast cell reactions, they can also inhibit my recovery or even be dangerous. In many ways, the hospital is less safe than my home. Here are a few reasons why:

Hospitals can’t feed me

The list of foods I can’t eat is longer than the list of foods I can eat. For example, I can’t eat garlic or corn syrup, which eliminates most menu items. At home, I have to cook fresh and organic to avoid reactions. In order to eat in the hospital, I must rely on friends to bring me specific brands of food that I trust.

Hospitals can’t even offer me a beverage

I can’t drink tap water nor most bottle water. At home, I only drink Fiji water and lactose free milk. During my most recent hospitalization, I needed to drink water to make sure my ureter was working. I didn’t have any Fiji water with me, so I tried drinking the tap water, willing my body to accept it. Unfortunately, that’s not how mast cell disease works and my throat swelled half shut.

Hospitals don’t have the medicines I need

Two years ago, I had a life-threatening mast cell reaction. An ambulance quickly transported me to closest emergency room and I was given IV medications as I clung onto consciousness. Hours later, the ER doctor asked if I would like to be admitted to the hospital. I wanted to be admitted, having almost died, but I had to decline because they didn’t have my medications. These days, I try to carry most of my medications, a full tote bag’s worth, on me at all times, but surprise reactions happen.

Hospitals are full of mast cell triggers

Inevitably, during my hospital stays, my IV triggers a rash and someone wears perfume into my room. Sometimes the triggers are surprising. Recently, a well-intentioned nurse offered me heat pack for my back. I hesitated at first, but it felt wonderful when I placed it on top of my inflamed kidney. Within two minutes, my skin erupted with hives and my blood pressure dropped. The nurse didn’t offer me anything new after that.

*****

Surviving the hospital with mast cell disease is a feat. Once my life-threatening reactions are under control, I leave the hospital as quickly as I arrived (usually exclaiming, “Get me the hell outta here!”). I am always grateful to return to the safety of my home.

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 7^th 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.