All Flared Up

Three days after I started taking prednisolone (30mg), I got sick. Really sick. A nasty cold that completely took away my taste and smell. No fever, no chills. Just coughing, phlegm, and a nose that filled the thickest tissue with one blow.

After two weeks on prednisolone, I was talked into getting four vaccines, all on the same day. Two in each arm. My cold was not completely gone, but I felt well enough and was certain I was on the mend. It had been years since my last vaccine (a tetanus shot for being bit by a snake, but that’s a story for another day), and decades since the majority of them. I knew it was too much, when I almost fainted after the nurse pushed the last of the liquid from the fourth vaccine into me. She gently led me to the hospital bed and told me to lower my mask and take my time getting up.

Eight days after the vaccines, I start to fell unwell again. During the night, I had intense pain in my right side, right upper back and the top of my right shoulder, which was worse with inhalation and when I lay down. I am no stranger to back and neck pain that appears out of nowhere. So, I thought it was spine or muscular related and didn’t think much more about it as the next day unfolded.

By the afternoon, I developed a fever of 39,3 C (102.74 F) and started having intense chills and body aches. I emailed my hepatologist who had warned me at my first appointment with her that if I ever developed a fever, I had to go to the emergency room. She responded, quicker than I expected, and wrote, “Yes, you need to go. Because you have had a cold for awhile and now there is a fever, it could be a super infection.”

A super infection? I had to Google that. It sounded serious, so I went to the hospital. The waiting room was full to capacity. The air was stale and motionless, like a sauna. As I stood at the front desk waiting my turn, I felt like my face was going to explode from heat. I pulled at my fleece scarf and unzipped my jacket. Finally, the front desk woman registered me in the computer system, waved me over to the triage area and told me to find a seat, if I could.

It wasn’t too long before the triage nurse called me in and I explained everything. He looked at me with compassion and asked, “Do you have patience?”

“Yes,” I answered. “Why?”

“Because you will need it,” he said. He handed me a small piece of white paper with something cryptic scribbled on it and told me to give it to the woman at the front desk.

Just before leaving, I turned back to him and asked, “How long do you think it will be before I get called in?”

“Oh, it will be hours,” he said. “Hours.”

I handed my little white paper to the front desk woman, who glanced at it, deciphering the secret code, and then typed something into the system. She placed a hospital ID bracelet on me and invited me to sit in the larger waiting room. Trying to assess priority levels, I briefly scanned room. Everyone looked like they were either in intense pain or were deathly ill. The triage nurse was right, it was going to be a long night.

When a nurse called my name a few minutes later, I was surprised. I thought for a minute that I’d misheard her. She repeated my name and I stood up to follow her back. The nurse looked like she was 18 or 19 tops. She wasn’t wearing a mask, so I could see her whole face as she kept her eyes on me. Watching me like you do your elderly grandmother. I was, of course, old enough to be hers.

She was smiling, a sweet, childlike smile, as if she had a special secret she was eventually going to tell me. She led me to a bed in the hallway with some privacy panels around it, gestured for me sit down and told me she’d be right back. I looked at the bed, wondered if the sheet had been changed and then plopped down anyway with exhaustion. The nurse returned with a hospital gown and told me to remove my sweater, shirt and bra and put the gown on. She held the gown up between the privacy panels in an attempt to shield me from anyone walking by as I slipped off my bra. She quickly put the gown in front of me so I could slip my arms into it and then laced up the back.

Next came the poking. First for blood and lots of it. Then for the saline drip. After that came the COVID/influenza test. The dreaded long Q-Tip up the nose. The nurse pushed it in so deeply and pressed so hard, it felt like she was trying to access my brain. I pushed my head back into the pillow to try to get away from her as she turned the Q-Tip an inhumane number of times. Either I’d forgotten how painful the COVID tests were, or this was the worst one I had ever had.

When I finally fell asleep, someone else woke me up for a chest x-ray. And I dutifully followed her, rolling the saline bag stand next to me as we walked down the hall. I felt the cold hospital air on my back and wondered if my gown was still laced up.

An hour or so later back in my hallway bed, one of the emergency room doctors came to see me. She asked me a series of questions, “Do you have a sore throat? Headaches? Nausea or vomiting? Abdominal pain? Ear pain?” I answered no to all of them. I told her about the right-sided pain during the night. She listened to my lungs and said they were clear. She told me I’d need to wait a bit more before they got all the test results back and then she or another doctor would be back to see me.

A second emergency room doctor returned. She told me, “All of your tests were normal. We found no infection, just very slightly raised inflammatory markers and your x-rays were clear. I would like to listen one more time to your lungs and if they sound good, I will feel comfortable sending you home.” She listen and was satisfied.

“Can I work tomorrow?” I asked her. Mostly because I’d already missed so many days of work, I was afraid my boss would sack me.

“Yes, if you feel well enough. But I can give you a doctor’s note for the next two days, just in case you decide you’d rather take some time off to recover a bit,” she offered.

“Ok, that would be good, thank you.”

She returned a few minutes later and handed me the doctor’s note. “I hope you feel better soon,” she said and then walked quickly away

My young nurse returned to see if I needed any help. “I just realized that I forgot to ask the doctor what she thinks the problem is, since it’s not any kind of infection,” I told the nurse.

She turned her head to look down the hall, presumably for my doctor. “I would have to look at the notes, I do not know what the doctor’s opinion was.”

It was late. I’d been at the hospital over three hours and just wanted to get home. “That’s ok. I was just wondering if it had anything to do with the four vaccines that I had 8 days ago.”

The nurse’s smile vanished and she looked worried, like she wanted to tell me something but knew she shouldn’t. She shifted her weight nervously from one foot to the other, “Well, yes, it very well could be. That does happen sometimes.”

That was good enough of an explanation for me – just a run-of-the-mill vaccine reaction. Even though my hepatologist had made it clear in her last email to me (the one encouraging me to go to the hospital) that what I was experiencing had nothing to do with the vaccines, it made the most plausible sense to me.

The next day, I felt relatively good. So, I went to work. By 3 pm, the chills started again, this time more violent than before. Then the fever. When I got home, my temperature was 38.8 C (101.84 F). I fell asleep at 8pm and then sweat so intensely, it was like someone opened a fire hose on me.

This same cycle repeated itself for four nights in a row and then suddenly I had one whole day and night of reprieve. I thought I had finally turned a corner and the clouds were parting. I went to work the next day and felt quite fit in the morning. And then around 4pm, the chills returned again and this time with a vengeance. I had trouble keeping focused while driving home, I was shaking so violently. My fever was 39 C (102.2 F).

“We are going to the hospital”, my husband said. Making the decision I was incapable of making for myself.

This time, I was placed on super priority and was given the VIP treatment with my own room and a heated gown. The nurse repeated all the same tests and hooked me up to a saline drip again.

Some time later, a young male doctor and an even younger female doctor entered the room. He had an accent that told me that he was also speaking a language that was not his mother tongue. As he peered down at me, I could see his jet-black chest hair poking out from under his blue scrubs. He asked me a series of questions. I gave him the background of my last visit 5 days prior and how they didn’t find anything and then what I had experienced over the following 4 days. He looked up at the female doctor, nodded his head and said, “Ok, hmm.” And then, “Ok, we will be back shortly.”

They returned with an ultrasound machine. This was new. They didn’t do this last time. “We will check your lungs, gallbladder, liver and heart,” the male doctor said. The female doctor started the ultrasound with comments and suggestions from the male doctor, but after several minutes of struggling to find my gallbladder, he asked if he could take over. It became clear to me that she must be a resident under his supervision.

Despite his full-doctor expertise, he also could not find my gallbladder. At which point they thought to ask, “Do you still have your gallbladder?”

“Yes,” I said.

“Well, we will proceed anyway to the lungs,” the male doctor mumbled to the resident. With two passes over my lungs, he found something. “There!” he said, “That is a definitive finding.”

After they checked my heart and turned the ultrasound screen to face me so I could see how strongly my heart was beating, the male doctor said, “We found evidence of a lung infection. Now we will order an x-ray so that we can look at it in more detail. Then we will let you know.”

An hour later, the female doctor returned with the news. “You have pneumonia and will need to take antibiotics for 5 days. Unfortunately, when we re-examined the x-rays from your first visit to the emergency room, we realized that there was indeed a very small spot that they missed.”

They missed it. Misdiagnosed. Sent me home with a green light.

I know, we are all human. Anyone can make a mistake. But this felt hard to take in. So much needless suffering.

“Is this my new normal?” I asked my hepatologist the next day when she called to check in on me. “Am I just going to be sick all the time like this?” It felt like like I was trapped in a stranger’s body and everything was broken.

“No, no. I would hope not,” she said. “It was just an unlucky combination of flu and cold season and the medication. It will get better. My other patients with Autoimmune Hepatitis are not getting sick all the time like this.”

After two days of antibiotics, I am already feeling a bit better. Still short of breath, still sweating at night, still having pain in my right side and back. But no fever, no chills. And with that, a tiny sense of hope. Like maybe I can start to trust my body again. Maybe even if it was broken, it has the ability to put itself together again. Moment by moment. Cell by cell.

So I am hanging on to this hope. Because right now, it’s the only thing left to do.