Twice in a million: Heather McNamara on surviving two rare CVST strokes

By Heather McNamara

The first intelligible words I remember speaking when I woke up were “I wish I hadn’t…” 

My mother answered from beside me “Wish you hadn’t what?”

“I don’t know? Drank so much? Eaten so much?”

“It wasn’t one of those,” she said. “The doctor told me. It was a CVST. It’s a very particular kind of stroke that happens because your blood is clotting in your veins.”

“What should I have done differently, then?”

“There wasn’t anything you could do. It was just going to happen.”

Nine days previously, I’d woken up with a headache. I’d been working overtime hours for about two months straight and the headache seemed to me to be pretty easy to explain. I took a couple of tylenol and it was managed, but 5 hours later it was back. I took a couple more tylenol. I worked, I took tylenol, I slept, I took tylenol. The headache persisted. 

I called my mother and complained about it. She told me I should see a doctor. She had a bad feeling. I didn’t have the money on hand for another doctor appointment, but she said she’d send me some. I agreed to go if she did. I took more tylenol. I made an appointment. I worried about all of the tylenol messing up my liver. The usual recommendation is to take tylenol then aspirin or ibuprofen 3 hours later and switch off, but I swell up and get covered in hives when I take aspirin or ibuprofen. Tylenol was my only option.

I went to the doctor. I did something I’ve never done before. I looked her straight in the eye and I said. “I have had a headache so bad for the last four days that I have hardly slept. It’s been awful. I need help.” I made sure I had eye contact with her before I repeated myself. “I need help.”

She asked if I had other symptoms. I replied truthfully that my ears had hurt a bit and that I wake up with post nasal drip. She looked up my nose. She looked in my throat. She looked in my ears. She asked if my headache gets worse when I lean forward.  I leaned forward to check. “Yes.” She said she didn’t see anything but her best guess was that it was a sinus infection and she just wasn’t seeing the post nasal drip. I was given Augmentin and Prednisone. 

Prednisone is a steroid. Patients taking prednisone often feel a burst of energy and some mood changes. It can cause a mood lift or unusual anger. I felt both. I yelled at a man in the Winn-Dixie for wearing a mask under his nose. I had extra energy for work. My appetite increased. I didn’t feel quite as defeated by the headache. The headache persisted but actually didn’t seem like it was as big of a deal. I slept better. I’d developed a routine around it. Take the tylenol then sleep then wake up 5-6 hours later to take another dose and go right back to sleep.

My second day in the ICU, a neurologist came to visit me. “I’m so pissed at my doctor,” I said.

“Why?” She asked.

“I went in about a headache and she just told me it was a sinus thing. I’ve been on steroids and antibiotics for days. She could have stopped this.”

“How?” She threw her arms up. “Do a contrast CT on every patient that comes in with a headache? This kind of stroke? Sinus infection probably would’ve been anyone’s guess.”

June 21st, 2020 was a Sunday. Summer solstice. The longest day of the year and my longest night of the week. I worked for 11 hours between 8:30 p.m. Saturday and 9:00 a.m. Sunday with very few short breaks. The headache didn’t seem so bad that night. I even forgot to take my tylenol as it was wearing off at the 6 hour mark. I took my last dose of prednisone as the night began. I drank plenty of water and had a cup of black tea.

I was exhausted from all of the work, and to that I attributed forgetting words and misspeaking randomly through the night. For the most part, I was able to keep it together. When I drew on the powerpoint presentations to highlight things, I would occasionally trail off on the right side and then cheerfully go “whoops! Haha! Sorry it’s a bit late for me here” and correct myself. As typical with video chatting, I could see my face in a little box the whole time and nothing seemed amiss (even if the faces in the other boxes looked a bit confused).

Triumphantly, I finished at 9:00 a.m.. I still had some notes to leave, but I was pretty much done and I was thrilled. I got up for my first bathroom break in 5 hours and happily made my way past my sleeping wife into the en suite. That’s all I remember until, like a scene from a hospital drama, I woke up on a stretcher, surrounded by running nurses and doctors.

The rest of my memories from that day are stitched in order with help from Lauren and my mother. I cannot put them in chronological order on my own power. They also do not connect with one another. Though I’ve been assured that I was conscious the whole time, great swaths of connecting time are missing from my memories as though I’d been falling in and out of sleep.

The nurses turned me onto my side and lifted up my dress, apparently finding that I’d soiled myself. “Ewwwww,” one of them said. They cleaned me and cut my dress off. I was humiliated but grateful for being cleaned.

My mother was at my side. I reached out to her. I hadn’t seen her in months due to social distancing measures. “I’ve missed you!” I said. She patted my arms. “You just had a little stroke,” she said, holding up her fingers to indicate something the size of a penny. “A tiny one. No big deal.”

A doctor walked in. “There’s a HUGE clot,” he said.

Mom seemed calm so I felt calm, too. “You’re going to get some surgery. You’ll wake up all better. It’ll be fine.” I had to pee. The nurse gave me a bedpan. My mother turned around to give me some privacy but I couldn’t pee into the damned bedpan anyway.

“You’re going to surgery in a few minutes and they’ll give you a catheter anyway” the nurse said.

I was surrounded by doctors on all sides. Lauren walked in. I called her by my ex-husband’s name. Then I was confused. Lauren said something like “DO YOU KNOW WHO I AM? I AM YOUR WIFE. MY NAME IS LAUREN.” Then I was confused and worried.

They brought in another doctor via video conference. He was on a screen. They wheeled him next to my head. He asked me my name. I replied with gibberish. He asked me my birthdate. I replied “twenty twenty twenty twenty.” I knew that was wrong when I heard it. I tried again. “TWENTY TWENTY TWENTY TWENTY!” I became even more confused and worried. He asked me one more question. I don’t remember my reply, but I remember Lauren giving the correct reply after mine was wrong. I tried to speak again. The words made sense in my head but when they came out they were completely different. “Don’t try to speak anymore. That’ll go away in a couple of weeks; it’s okay,” the doctor said.

I was wheeled quickly into a helicopter. The Life Flight paramedic held my hand and nodded and kept repeating that I would be okay. I kept my eyes on him because I was afraid maybe the door was open on the other side. I don’t know why I thought that but I remember thinking that if I turned to look the other way, I’d fall out of the helicopter. 

I was wheeled quickly into a room for another contrast CT. One of the lights had a picture over it to make it appear that I was looking up at the sky on a beautiful autumn day. The IV contrast solution tasted awful.

I was in motion again. A woman put a mask on my face and said “This is oxygen!” I thought she was lying and giving me anesthesia. I took a few deep breaths and asked, apparently coherently “why isn’t it knocking me out?” She looked confused. “Because it’s oxygen?”

Apart from my conversation with my mother, the first night and second day in the ICU were largely uneventful. My headache was still there and they gave me Tylenol for it. I was in a foul mood. I did not like my catheter. They gave me bags of blood and told me my anemia was a disaster. Apparently my hemoglobin had been in the sixes. 

My nurse tried to feed me but I didn’t want to eat. My right leg felt like it was full of television static. I made sure it wasn’t trapped under anything but the feeling persisted for hours nonetheless.

Lauren arrived and set up camp on the small couch. She had her laptop and a lot of information to give me once she determined that I was able to speak and understand what she was saying. She taught me all about CVSTs and told me my prognosis was good now that I have come out of the surgery. She didn’t leave me until they made her.

My headache got worse that night. I realized they hadn’t been giving me my Augmentin for the sinus infection. I worried about antibiotic resistance. “I need my Albuterol!” I told my nurse. “You’re not on Albuterol,” he said. I got frustrated and said my head hurt. He gave me a strong pain killer or an Ativan. I don’t know which, but something that was a sedative. I began falling asleep pretty quickly.

I fought against the sedative. “I need my Albuterol!” I told the nurse several times. Finally he responded “The spray? The inhaler?” I finally realized I’d been naming the wrong medication. I tried to explain myself but it was just gibberish.

There’s a gap in time in my memory. The neurologist from before is standing there and asking me questions. I can only respond “I’m scared.” He jumps to action and says “Let’s go!” The woman is back with the oxygen mask.

The next morning I woke up and another nurse was trying to feed me dry chicken. I was choking on it. She asked me questions and I answered with gibberish. I was dismayed. All of my speaking progress had been lost. “It’s okay,” the nurse told me. “It will get better.” They gave me more blood.

Over the next few days, my capacity for speech returned very slowly. The feeling in my leg did not. Lauren sat by my side at every possible minute. Social workers called me and tried to get me to answer questions about how much money I earned and my bills. It was very difficult to answer.

Lauren promised me that I was going to live and be just fine. She was going to take care of all of the new routines for me and make sure that I got better. We were going to have long lives together no matter what. She was not done with me.

She introduced herself to every doctor and told them all my history when they entered the room. She asked every nurse to show her how every procedure was done so she could do it, too.

My mother could not visit me because COVID protocols said that I could only have one visitor per day. She called me often and helped me gather information for the social workers so I could get emergency Medicaid.

My brother stayed up with me at night after Lauren was forced to leave. He gave me pep talks over facebook messenger. He’d been severely ill as a child and spent many many nights in the hospital with his severe asthma before medical science developed steroidal inhalers. He empathized with the indignity of it all. I told him I couldn’t feel my leg and could only walk with a walker. He promised me that I’d be back to my old self or better than ever and that we’d go on a hike in Colorado together once it was all over. He was very convincing.

Otherwise, it was just a struggle. I struggled day and night. I watched videos of cats and dogs to try and cheer myself but nothing worked. I would not cheer up until I’d been home for a long time.

On my last day in the hospital, I made a last attempt at taking responsibility – at taking this disaster off of the craps table and back into my hands. “Maybe I should’ve done a better job at taking care of my anemia.”

“Nah,” replied my new hematologist. “We did a test to see if that was it. No connection.”

I was 38 years old. I thought of the lifespans of humans in the neolithic. 38 years. That’s all I would have had if not for luck and modern technology. And there was nothing I could have done about it. My children, 11 and 16 at the time, would have had no mother for the rest of their lives. 

In the weeks following my return home, I began to regain some of the sensation in my legs. I learned to walk for short distances (to the bathroom, for example) without a walker as long as all trip hazards were removed. 

In the 9 months since June 21st, I’ve made a lot more progress than that. I can speak at a normal pace and without jumbling words now. The dexterity in my arm has fully returned and my leg is mostly recovered. I permanently suffer pain in my right leg in the areas that remain numb to the touch. When it gets bad, it spreads to my arms. The pain is severe and impossible to ignore without pregabalin. 

I need to see a specialist almost every other week. I have a neurologist, a hematologist, and a gynecologist all working on my case to make sure that I don’t have another stroke. They’ve given up trying to figure out what caused it. It’s all about prevention now. Lauren has kept her promise and takes care of me every single day with every single need I have. I don’t ever have to ask. 

I am lucky.

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About Zinnia Jones

My work focuses on insights to be found across transgender sociology, public health, psychiatry, history of medicine, cognitive science, the social processes of science, transgender feminism, and human rights, taking an analytic approach that intersects these many perspectives and is guided by the lived experiences of transgender people. I live in Orlando with my family, and work mainly in technical writing.
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