One sunny day in mid-August two years ago, without any warning whatsoever, I broke out into hives.
It had never happened to me before. It started at the base of my skull and spread to the top of my head. My lips began to feel swollen and numb. Parts of my cheeks swelled, and so did the tissues around my eyes. I was sitting on a stone bench waiting for the bus in Québec City, where I had recently moved to teach English, and this had never happened to me in my life before.
When I got home, I looked in the mirror and discovered that the hives were forming welts on my upper chest. They were intensely itchy. As I had never had hives before, I didn’t know that they formed beneath the skin and went to the local pharmacy to see if I could buy something to calm the itching. The pharmacist explained to me, in French – which was rather new to me at the time – that a topical product was not going to help. I didn’t have a family doctor and thought that the city’s government-run walk-in clinics would be full for the day and decided to go the next morning.
I woke up well before my alarm went off, puffier and itchier than ever in my life and having difficulty breathing. It was rather early for the local walk-in clinic, but I got dressed and dizzily got myself there somehow. It was about a ten-minute walk away. When I arrived, I asked if I could see a doctor and explained that I was having some trouble breathing. The man at the reception window looked at me for a moment, then nodded and went to call someone. The triage nurse took my blood pressure, checked my oxygen level, then had me lie down and strapped an oxygen pump to my face. She came back with a doctor and they asked me endless questions about my allergies. I explained the ones I knew of – primarily cats and dust mites – and they didn’t look convinced. After awhile, they told me that my oxygen levels were okay again and gave me prescriptions for cortisone and sent me off. I went back to the pharmacy. This time the head pharmacist was in. As is customary in Québec, he asked what I was being prescribed cortisone for, all the while peering at what I felt were my embarrassingly puffy lips and eyes. I said that I had suddenly started having hives. He then told me that my lips were blue and that he thought I should go to a hospital. If you’re an American reader, yes: trips to the hospital are free. However, I don’t have a car, didn’t think I was at the point of needing an ambulance (and those aren’t free!), and wasn’t sure what to do. I called a friend and asked her to come and get me and take me to a hospital. She did.
At the check-in counter, the nurse looked at me, then sent me directly into the triage room. I was pleasantly surprised; usually you have to wait a good while for this. Anywhere from twenty minutes to an hour would be customary. The triage nurse took my blood pressure and checked my oxygen level, then stood and told me that they were going to check me in. She asked if I could walk or whether I needed a wheelchair. I almost laughed! I said I could definitely walk, and did so. I didn’t quite realise that they really meant it about checking me in: they made me take off my clothes (later I realised that they did this for me; I could barely stand at the time) and lie down on a stretcher, where I was immediately connected to an IV. I looked my confusion at the triage nurse, who told me gently, “Madame, vous êtes en choque…” (“Miss, you’re in shock”). The same allergy questions came: are you sure you’re not allergic to latex, were you stung by a bee, did you touch anything unusual, were you eating something when it began, and so on. I said no, no, no, no. I asked what was in the drip and they told me: a mixture of cortisone, benadryl, and epinephrine. Allergy medication. I asked if it was anaphylactic shock, then, and they looked at each other, then told me they weren’t sure but thought so. They put me under observation for nine hours, decided that my hives had gone down to a satisfactory level, then sent me home with a new handful of prescriptions.
It happened a second time and I went through the same process. That time, they told me that the person I really needed to see was an allergy-immunology specialist who worked at a different hospital. They gave me an urgent referral, and informed me nicely that the waitlist was usually about a year with a regular referral, more like two or three months with an urgent one. They wished me luck and suggested I try his hospital the next time.
I did that. Each hive outbreak was getting successively worse and worse. The third time I went to the hospital, I didn’t come out again for days. I was alone in Québec City, dealing with all of this in a language that was rather new to me, with constant new vocabulary coming up. This time, I took a taxi and had it drop me off at Emergency. The waiting room was teeming with sick and injured people, but once again, I was admitted at first sight. Upon being wheeled into the first area beyond the waiting room doors, a doctor took one look at me and jabbed an EpiPen into my leg. Twenty minutes later, much consternation broke out upon their realisation that it hadn’t done anything for me whatsoever. I was admitted and given an actual room.
For the first twenty-four hours, after explaining what was happening to each new set of rotational doctors and nurses, the first doctor I saw came by and told me that they frankly had no idea what was happening to me, and that they had called the specialist. By this time, it was Labour Day weekend and they weren’t sure if he would be willing to come in. To my lasting gratitude, he did. He came to my room with an intern in tow, pulled back around the curtain around my bed and his eyes widened almost comically. He later told me that he had never seen such an acute case of hives in his entire career. I was red and itchy and had long, bloody scratch marks on nearly every part of my body by this point. He also told me that these hives are the itchiest thing that can happen to a person and that he would tell me not to scratch, but knew it would be essentially impossible not to. Then he told me that he didn’t think I was having an allergy problem, nor that what I was experiencing was anaphylactic shock.
He said he thought it was immunological.
My heart sank. As a non-medical professional, “immunological” puts me immediately in mind of HIV/AIDS and similar horrors. I asked what that meant, and he told me that the was thinking that it was one of two possibilities: One—I had a virus that I’d never had before and my immune system was having a violent reaction to it, mimicking a slow onset of anaphylaxis. Or, and he emphasised that we were going to strongly hope for the first case, two, there was a problem with my immune system itself, i.e. it was reacting to nothing whatsoever. In this case, the hospital would keep me in an isolation chamber for up to two months while they systematically shut down each system of my body, looking for the problem with the immune system. I was horrified and promptly started to cry. The specialist briskly told me that he had already sent for someone to come and take blood so that they could get started on the testing. He also cancelled all of my former prescriptions and re-prescribed them in new doses: a combination of benadryl, cetririzine, cortisone, and a third, older strain of antibiotic whose name I’ve now forgotten.
After a few days, the hives were under control and I was sent home, but on the condition that I return every other Friday for months to come. Each time I came back, the first thing I did was have blood taken. The specialist was extremely thorough. After repeated testing, the virology lab found a virus I’d never heard of, cytomegalovirus (CMV,) in my bloodstream and the specialist decided that this was the culprit. Most people contract CMV as children but it doesn’t usually show outward symptoms. Somehow I had never been exposed to it and just had a freakish reaction to it. I thought that was over, then: the hives were under control, but I was horribly tired all the time. This was to be expected, I was told. Similar to recovering from mono, the body fighting off a virus this way causes tremendous fatigue. He was concerned that the severity of the reaction might have put strain on my heart, so I was put through an entire cardio work-up. Then they checked my liver. Then my kidneys. No problems were found, and after nearly five months of regular hospital visits, I was told I could stop coming in.
It took nearly that amount of time to recover my energy and strength, and to this day the lurking fear that a similar reaction might crop up has never left me. It was a wrenching experience to go through on my own, though my mother came out to stay with me for a week once I left the hospital. The one thing I was incredibly grateful for throughout the process was the fact that I was lucky enough to have been born in Canada and that my health insurance is paid for through my taxes. I paid for the prescriptions, but even those are partially subsidised in the province of Québec. If I had been living in the US when this happened, it would have bankrupted me. All of those visits, all of those blood tests, the cardiology tests, the stress tests, the dozens and dozens of urinalyses that were collected, the food I was served, the gowns I wore, the beds I slept in – I didn’t pay a penny over what I pay in my income taxes, and while I’m rather used to that as the norm here in Canada, I’m also painfully aware of the fact that it isn’t the norm in most of the world. I’ve lived in the US for short stints in the past, always without a shred of medical insurance, and just hoped for the best. It strikes me more and more that health care should be considered a basic human right, like access to food, water, and shelter. I’m lucky that it was only a virus in the end, but far, far luckier that I live in a nation that didn’t force me to choose between living in agony or draining my bank account. This was my longest brush with any serious medical problem but it really made me think soberly about the issue of access to health care. I’m so very grateful that my country has made it a priority. It’s scary enough going through health problems without also having to worry about it bankrupting your family. How incredibly lucky I am!