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.