The Whiplash Roller Coaster Ride
- Brenda Smith
- May 29
- 8 min read
The last several days I've seen ups and downs like a terrifying roller coaster ride that made me want to withdraw and rest as much as possible between the dozens of visits from doctors, PAs, nurses, CNAs, radiology technicians, housekeepers, mobility technicians and food service staff. I've been mostly on alarmed bed and chair watches, meaning I could only get up in the presence of one of my medical team after ringing the call button and sometimes waiting longer than needed to prevent otherwise avoidable accidents. 😒Through all, Monica has watched over me to meet my every need, including lending me a special soft blanket gifted her during a hospital stay years ago. It's the best warm, cuddly blanket a person could want. Below, I'll take you on my last five whiplash days.
May 22 - Spa Day
Being in the hospital has its advantages, like the special pampering I got this day from my lovely CNA Anna. I hadn't slept well the night before, so I woke up feeling more tired than usual. After helping me get a long, hot shower in the early afternoon, she rubbed body lotion on my back and legs to help counteract Denver's extreme dryness. I snuggled into bed with Monica's blanket and Anna put compression devices on my calves which alternated gently inflating, simulating a relaxing massage which put me into a deep restful sleep until a nurse arrived to get my next set of vitals.
May 23rd - All Hell Breaks Loose Day
As usual, Dr Piquet arrived for her rounds at the crack of dawn to check on me before starting her clinic hours. I knew she'd be coming really early, so I wanted to surprise her by being up and dressed before she arrived. I put on one of my cute new pajama tank top and shorts sets I bought for being in the hospital so I wouldn't have to endure the dreaded toga style hospital gowns. As her cheerful face peaked in through a small crack in the door, she greeted me "Good morning, Brenda." I welcomed her in and told her I felt fantastic.
She agreed I looked really well, a positive sign at that point. After she checked my heart, lungs and the stiffness of my muscles, she said she believed my leg and back muscles had already loosened a bit. Then she gave me a sympathetic look and announced, "Tonight's the night I think it's probably going to happen." She'd been warning me since the start of the trial that I would likely experience a cytokine release resulting in a high fever response to the new T cells doing their job, searching out and killing off the rogue B cells producing the GAD 65 antibodies. "The high fever is expected," she reassured me, her voice calm and confident, promising that she and the team would guide me through it.
I found it hard to believe that, as well as I felt, I could possibly be running a high fever by that night, but she waggled her head as she left my room as though she felt confident wagering a bet on it. Monica left the hospital to have lunch with a friend since I appeared to be doing so well at 11:30 am. Not long after she left, in a matter of minutes, I felt chilled. The fever had arrived six hours early. I wrapped in my winter chenille sweater topped by Monica's soft blanket, but I just got colder. Not only that, but every joint in my body ached. The fever with a force of a 3 ton elephant had knocked the life force out of me. I didn't want to remove my frozen arms and hands from under the blankets when the nurse came into check my vitals, but she wrestled one arm free.
The nurse confirmed I had a fever, but it wasn't yet high enough to start me on the steroid dexamethazone, which would eventually help to bring it down. Shivering uncontrollably, I lay in bed, buried under a pile of blankets, the cold seeping into my bones like I'd been placed in a meat locker. When Monica got back from lunch, it shocked her to see me so down and out. I felt so cold I could bare speak coherently, and just wondered why they hadn't given me something to break the fever.
Monica kept guard over me, knowing I had to go through this, helpless to make me feel better until the nurses decided to administer drugs. She gave me sips of water to keep my mouth from becoming parched and told me I'd get through this. Finally, when my thermometer read 103 degrees at about 6:30 pm they administered dexamethazone through my port.
I must have fallen asleep for a while as the drug gradually lowered my fever, because the next thing I remember, it felt like a fire was raging through my body. I had no blankets over me. Sweat poured profusely from every pore of my body. Sweat had drenched a gown I don't remember putting on. My soaked head appeared as if I'd just gotten out of the shower, yet none of the sweat had a cooling effect. I begged my nurse to bring me ice packs.
A short while later, the nurse returned with four large ice packs. We positioned one at the back of my neck, one on top of my head, and one under each armpit. How could it be possible that just a few hours ago my body had been freezing, now I was begging for ice bags to cool off the stoked furnace burning inside me? Monica fed me ice chips. The whole cytokine release felt like a ticket to La La Land (not the Emma Stone and Ryan Gosling one). Monica stayed in the hospital until midnight when my fever had dropped back to normal and I had stopped sweating. Very weary from my extremes of the day I slept until the 4am vitals check and then again until Monica arrived back the next morning.
May 24th - A Short Break
Grateful is how I felt seeing Monica prance into my room every morning with a smile on her face. She couldn't believe how much better I looked and indeed I felt almost normal, definitely stronger than the previous day. I had an appetite, and I wanted to get out of bed and move around. When the fever started, they confined me to an alarmed bed and chair. I needed to use the call bell and wait until someone could come help. At that point, even Monica wasn't allowed to help me move around. That afternoon, I did convince them to let me try a walk on the "bridge" hallway. Melvin, a CNA/mobility specialist, offered to accompany me. From my room, I Zingered to the starting point of our walk.
I parked my Zinger and holding on to my IV post; I took my first tentative steps. To my amazement, I could actually pick my feet up off the floor and take some normal steps, an action I hadn't done for a few years. For eight years, muscle stiffness had reduced my stride to a simple shuffle of my shoes along the floor. Now I could take actual steps. I kept looking at my feet as if seeing the return of long-lost friends. I walked to the bench at the end of the hallway, where I sat for a rest. Suddenly overcome by the medical miracle happening in me, I cried tears of joy I never expected. My heart soared as I sobbed, while Melvin rubbed my back. "You're doing great, Brenda. You got this girl," he said.
Monica cheered my progress, excited to be witnessing my first normal steps. After composing myself, I walked three more lengths of the hallway, stopping for breathers at each end. I'd begun a return to normalcy from the disabling stiffness of the past eight years.
That day and the next, they assigned me a lovely nurse named Brenda, who spent a lot of time helping me to get cleaned up and generally getting to know me. (Cumulative vial count 158)
Those days and hours passed quickly as I thought I'd come through the worst of the T cell after effects. But Dr Piquet had reminded us repeatedly it could take a few days to get through them.
May 26th - It Happens Again
When Monica left for the hotel on Sunday evening, we both believed I would be fine over night. Sometime between the midnight vitals check and 2 am I started feeling chilled again. Unlike before, when my whole body was numb with cold, only my torso shuddered violently this time. My legs stayed calm and seemed detached from the rest of my body. The trembling exhausted me while I prayed for an ounce of warmth from the blankets. Even the blankets felt cold. My mouth parched with dryness. At 3:23 I had my nurse text Monica that the fever had started again, because I knew she'd be upset if I didn't let her know. He held my cell phone up for me to enter my password so he could text her, but my hands shook so wildly I couldn't touch the right numbers.
I could barely hold a cup of water without sloshing it all over. Worst of all, I didn't have the strength to get out of bed and I'd started to have diarrhea. They got another dose of dexamethazone into me and gave me Tylenol, which seemed to temper the shaking. There is no way to describe how miserable that night played out for me, the nurses, and the CNAs. Monica got to see me at my very worst. The diarrhea lasted for 32 hours and still flowed strong when Dr Piquet showed up the next morning. She didn't seem surprised by my second fever episode but said that if I had any further fevers, she'd use a different drug to stop them that would be kinder to my GI Tract.
That day my temperature went back to normal for a little while but I didn't want to put anything back in my stomach, so I ate a miniscule amount of protein to pacify my nurse and Monica, who insisted I couldn't stop eating. Meanwhile, they loaded me with Immodium and Simethicone for gas and bloating. Then, in the early evening, my temperature spiked for the third time. This episode was not as severe for chills, but the nurse called Monica back to my bedside. They treated me with the new immunosuppressant Tocilizumab that Dr Piquet recommended. That seemed to work in record time. Finally, that night, Monica returned to the hotel and I got some well-needed rest.
May 27th - A New Day Dawns
I slept until 8am vitals, nearly 7 and a half hours, barely waking for the 4am vital check. All I wanted that morning was to shower and put on a clean gown. I got my wish. My body weakened so much from the GI distress, I spent the day relaxing in the alarmed recliner and talking about plans for after I get released on May 29th with Monica. Everyone insisted I eat protein, so for the third time since I arrived, I had a bison meatloaf diner (a specialty food of Denver. (I've lost count of my vials during my fevered reverie, but I think it's about 192)
That brings you up to date. The roller coaster ride challenged me for sure, but Mom always used to say what doesn't kill you makes you stronger. Today I am a stronger woman! Again I can't say how much all your cards, emails, phone calls and ways you've shown me support through this trial have meant to me. I certainly could never have done this without Monica's selfless care, but I truly feel the heartfelt thoughts and prayers you are sending me. Until my next blog,
Love you,
Brenda
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