Lifesavers for Latasha

It started when I was a teenager. I would be sitting or standing, not really doing anything, when I would feel my heart start to beat really fast. Sometimes it would be super fast and super hard, as though it were going to pound through my chest. It would last seconds. By the time I would start wondering what was going on, it stopped, and I’d go back to doing whatever I was doing.

First, when it started, there would be months in between episodes. So, I didn’t really think anything of it.

Then, months turned into weeks. Instead of going away, they became more frequent. They also started lasting longer. Instead of a couple of seconds, they would last thirty seconds to a minute. That may not seem like a long time, but, as a teenager, I became scared that something bad was happening.

When they would happen, I’d yell for one of my sisters to feel my chest to make sure I wasn’t imagining it.

“Kim! Monica! Come here!” Whoever came first, I’d grab her hand and put it over my heart. “What do you feel?” I would ask. “Why is your heart beating so fast?” she’d ask. Okay, so I am not imagining it, I would tell myself.

I finally told my parents about these episodes I was having. My mom made an appointment with my cardiologist to have me checked out. At the time, I was seeing a pediatric cardiologist in Columbus, GA.

I didn’t really care for this doctor, but he was supposed to be one of the best in the area. I had been to him a few times for follow-up appointments, but not for anything like this.

Sitting in the waiting room, I felt out of place, because all of the other patients were little kids. The waiting room was set up for little kids, too. Toys, crayons and coloring books, and children’s books were on a table or scattered around the room.

When they called my name, my mom and I went back into one of the patient rooms. When the doctor came into the room, he was dressed in running gear. I didn’t know if he was coming in from a run or going out for a run, but he sure didn’t seem to want to be there. My mom and I explained the symptoms I was having and that they were starting to happen more often and for longer periods of time. I don’t know what I expected, but I expected more than what the doctor said.

“Oh, it’s nothing. This is normal for you and your medical condition. We’ll just schedule you for your next checkup in a year and see how everything is going then.”

That’s it? I was just supposed to live like this? I couldn’t understand how this was supposed to be normal and how to just live with it, but he was the expert. What did I know, other than I was the actual person living every day with this heart defect?

So, I did try to live normally with it throughout the rest of high school. During my junior and senior years, the episodes started really interfering with my life.

I typically take my showers at night, and that was true during my high school years, too. It’s mostly for two reasons: 1. It takes a lot of energy for me to shower, put on makeup, dry my hair, style my hair, and get dressed all at the same time. So, I split it up and shower and dry my hair at night. That way, I have energy in the morning to do my makeup, fix my hair, and get dressed. 2. Sometimes my body gets so tired that I do not respond to alarms and will not wake up in time to do everything. It doesn’t matter how much sleep I’ve had. I could take a nap after school and get eight hours of sleep at night and still sleep through my alarm. So, I would try to make sure I did as much as possible at night in case I had to rush to get ready in the morning.

One night, while I was taking a shower, my heart started beating fast. First, I thought it wouldn’t last long, so I tried to keep on with my shower as best I could. I started to get really hot and could feel some pain in my neck. Everything started going black and I was having trouble hearing the water, even though it sounded like water was rushing into my ears. This was new. I thought maybe the water was a tad too hot, so I adjusted the water temperature. Standing in cooler water, I waited a few seconds, but still could barely make out anything and couldn’t hear much other than the rushing noise in my ears. I sat down in the tub, hoping that would help.

My heart was still beating fast and pounding away, and I could barely see or hear. I felt sick, like I needed to vomit. “What is going on with me?” I wondered. I sat there for what seemed like forever, all while the hot water ran out and was now cold. I managed to turn off the water and sat there, still hot but shivering, too, from the temperature change, willing my heart to go back to normal beats. Finally, after a couple more minutes, I could feel my heartbeats slow down and become less forceful. Slowly, my hearing came back and then my vision. I still felt a little sick, but everything else seemed normal. I waited a little longer before standing up, turning the water back on, and finishing my shower. I didn’t say anything to anyone when I left the bathroom that night.

A few nights later and another shower episode happened. This time, once I could sense my vision and hearing going out, I hurriedly tried to finish in the shower. I didn’t bother with conditioner in my hair after rinsing the shampoo out. I wanted out of the shower and out of the bathroom, because I just kept thinking about blacking out and hitting my head on the tub or somehow drowning from the water. I didn’t want anyone to find me passed out that way if I did completely black out. The time kept ticking, and this episode kept going.

I got out of the shower and did my best to dry off and put on pajamas. I wrapped my hair in a towel. Then, I made my way out of the shower and into the living room, where I immediately laid down on the couch. My eyes were closed. I could still barely hear anything. I put my hand on my chest to feel my heart racing and pounding, as I tried to catch my breath, when I hadn’t even done anything to be out of breath. I was so tired, too. Not just sleepy, because it was close to bedtime. Tired. This had taken everything out of me.

I didn’t say anything to my parents or my sisters if they were in the living room. The doctor said this was normal for me, so why should I say anything to my parents again? I just had to figure out how to live with it.

But how could I do that when I never knew when it was going to happen? Thankfully, it seemed to happen when I was at home, usually during my evening showers. So, there were several nights where I’d have to go lie down immediately after getting out of the shower, or I would end my shower early and end up on the couch. Usually it would stop after a few minutes of me lying down, and I’d be okay to finish my nightly routine of drying my hair and doing whatever else to get ready for bed.

The summer prior to my senior year of high school, I got a job working at a new entertainment center called Hollywood Connection in Columbus. Hollywood Connection was an indoor entertainment center that had a movie theater, kiddie amusement rides, miniature golf, skate center, and arcade.

I worked in the kiddie amusement rides area, so I would run the rides, like the carousel, bumper cars, or swings. I hated working the carousel and the swings, because some of the kids couldn’t get on the horses/animals or swings themselves. And most of the parents didn’t want to help them, so I’d have to pick up these kids and put them on the ride. It wore me out. But, I never complained. I just did my job. For the bumper cars, usually two of us were assigned to work, because we’d have to close it down every few hours to mop the floor. Thankfully, most of the high school guys who worked with me were gentlemen and wouldn’t let the girls do the hard work like that. The carousel and swings, though, only had one worker assigned to them, so I was on my own there.

During that time, Hollywood Connection was always crowded and busy. Through the summer and on weekends during the school year, I would typically work lots of hours, sometimes two shifts if needed. I usually worked until closing time. On school nights, I would work until closing. So, once school started, I went to school from 8:00 or 8:30 to 4:00 or 4:30, grabbed something to eat, drove the 20-25 minutes to work, ran in and changed into my uniform, and then started my shift at 5 p.m. I’d work until 10 p.m., drive the 20-25 minutes home, eat something, shower, and do homework for however long it took me to finish. Then, I’d go to bed and do it all over the next day. I would have a couple of nights not working through the week.

Sometimes, there would be lock-ins on the weekends or on holidays. During a lock-in, customers paid a special price to do everything. After a certain time, no one could leave or enter the building until the next day at a certain time. So, we’d have to work overnight until early the next morning or afternoon, depending on when the shift ended. Hollywood Connection was open 365 days a year. I remember for Thanksgiving and Christmas, they would shorten our shifts to a few hours, so we could spend some time with our families. But, they would also schedule some people for two shifts, so you might work the early shift and then go home until the evening shift when you had to be back at work.

Eventually, I moved from working the amusement rides to being a cashier, where I sold tickets for the rides. I was able to sit during my shift and not lift children up and down off rides. There was a position called a “runner” who would work only a few hours each shift. This person was responsible for rotating through all the rides and the concession stand to give the workers their breaks. I kept wishing that I would be scheduled for that on a weekend, so I could get off work early for once. About a year into the job, my wish came true! I was scheduled to be the runner for one shift on a weekend.

On that night, everything was going fine. I had worked all the rides already and gave those people their breaks. My last rotation was working the concession stand we had where we sold popcorn, candy, and fountain drinks. A few minutes into that job and my heart started racing. “Just keep breathing,” I told myself. There was a line of customers, and I was trying to focus on pouring drinks, bagging popcorn, and running the register, all while my vision started blurring and my hearing started to go out. “This is not happening right now,” I thought as that sick feeling crept up and I thought I would have to vomit.

Somehow I made it through the customers without spilling anything and was able to sit down for a minute on the stool in the concession area. I closed my eyes and started breathing in and out, willing my heart to stop racing and pounding, and hoping my vision and hearing would come all the way back. Another customer. Slowly, I got up off the stool and tried to take and fill this person’s order. I felt like I was moving at a snail’s pace trying to hold a large cup while filling it from the soda machine that I could barely see. It had been a few minutes since this episode started, so I thought it would stop soon. After this customer, there was a lull, so I could sit for several minutes. Still my heart was racing and pounding. My vision wasn’t completely out, but it was like I had tunnel vision. The edges of my vision were black. The worker, a friend, who had taken her break came back, and I told her I was having trouble seeing and my heart was beating fast. She started telling me about a friend of hers who was diabetic and would feel that way if her sugar was low. She gave me a piece of candy in case my sugar was too low. I told her I didn’t think that’s what it was, but maybe it could be. I ate the candy to see if it helped. It didn’t.

My shift was over now, but I knew I couldn’t drive home like this. I would have to wait until everything calmed down and my vision came back. All the previous times, though, had not lasted this long. Maybe if I just gave it a few more minutes, I’d feel normal again.

Several minutes went by and I was still having the symptoms. Cell phones had just started becoming popular, and, since I had a job and was getting ready to go to college, I had talked my dad into co-signing for one with me. I think my dad had to co-sign since I was under 18 years of age at the time I got the phone. I used my cell phone to call my older sister, Kim, at work. She called home to let my parents know what was going on, but my parents had gone out that night. My younger sister, Monica, was home. I’m not sure if my parents left the number of the place they’d be or if Monica had to look it up in a phone book, but she called the place and asked them to have my parents call home. When my parents got the message and called home, Monica told them what was going on. They left the place to go home and called me from home. They wanted me to go to the hospital, but I told them I would be fine if I just waited a few more minutes.

By now, it had been over 30 minutes that this episode had lasted. All I kept thinking was how could this be normal for me? I was off my shift and didn’t want to stay in the building. I decided to walk slowly to my car and sit in it until I could drive home. All employees parked in the back parking lot, so I slowly and carefully made my way out there, squinting my eyes to try to see better, and pretending I was fine if I walked by another employee. Once I was in my car, I sat there with my eyes closed, hand on my chest, breathing in and out, waiting for the beats to slow down. After waiting over an hour for this episode to end and back-and-forth phone calls with my parents and sisters, my dad was done with me saying I just needed a few more minutes to wait for it to stop. I didn’t want to go to the hospital, because every time I had gone it was always the same conclusion. Either this was normal for me or they couldn’t find anything wrong with me. My dad called for an ambulance to come get me and take me to the hospital. There was a mixup with the ambulance, because even though they were told I was in the back of the building, they went to the front of the building. Unbeknownst to us, there was a kid who had gotten hurt in the skate center who also needed an ambulance. So, even though the first ambulance was meant for me, it took the other kid. I had to wait longer for the next ambulance to come get me in the back. I just knew with my luck that by the time the second ambulance got there, this episode would have ended and there would be no need for it.

That didn’t happen, though. By the time the ambulance got there, my parents and sisters were there, too. Monica said my dad drove like a maniac the whole time, and it was the one time my mom didn’t get on to him for driving like that. The EMTs hooked me up to monitors and said my heart was beating at around 200 beats a minute. They gave me some oxygen, since I was having trouble catching my breath. And off I went to the hospital. By the time I got to the hospital, the episode had ended. Thankfully, the EMTs had data to give the doctors. I spent hours in the emergency room while they ran tests. I was so glad the episode ended, because I was just ready to go home and lie down in my bed. That didn’t happen. I ended up being admitted to the hospital.

I spent the next few days in the hospital, while doctors tried to figure out what was going on with me. They said there was a protein in my blood that’s only there when damage to your heart happens. So, they wouldn’t let me leave. But, the whole time I was there, I didn’t have another episode. I was so angry, because it felt like another waste of time in the hospital. How was it possible that I had all these symptoms and they could never find anything wrong? When they finally discharged me because they couldn’t find anything, they said I’d have to follow up with my primary care doctor and my cardiologist.

I wasn’t too keen on returning to my cardiologist, especially since he never seemed too interested in helping me. Since I was 18 now, I assumed I no longer needed to see a pediatric cardiologist anyway. I scheduled a follow-up appointment with my primary care doctor and told her I did not want to go back to my cardiologist. After listening to my concerns, she mentioned that there was a cardiologist who worked at Emory in Atlanta and would come to Columbus once a month to see patients. She wanted me to see him instead of my regular cardiologist to get a second opinion of what was going on with me. I agreed to do that, so she did a referral for me to see him. He saw patients at St. Francis in Columbus, so I went there for my first appointment with him.

At my first appointment, I explained to him what was going on and what my cardiologist said about it. He responded, “Well, yes, it is normal that it is happening to you, given your heart defect and your surgeries.” Great, I thought, another waste of time coming to another doctor. “But,” he continued, “that doesn’t mean we can’t try to do something to help these episodes stop happening.” Okay, maybe this wouldn’t be a waste of time.

The first thing he wanted to do was have me wear a Holter monitor. I’d had to wear this in the past, so I knew what to expect already. A Holter monitor is a machine that records data continuously, typically for a long period of time, such as a week or a month. The monitor is hooked to electrodes, which are placed on your chest. If I felt any fluttering, rapid heart beats, pounding heart beats, or anything else out of the ordinary, I would have to push a button on the machine to mark that part of the data. Then, I would have to write on a log the date and time, what I was doing, and what I was feeling. After the specified amount of time of wearing the monitor, I just had to unhook it and mail it back or drop it off so the data could be analyzed.

“You’re having atrial fibrillation,” the doctor said at the next appointment. “We need to start you on some medication and see if it helps.” Up until this point, I’d only had to take medication prior to dental cleanings. Now, I had just started college and was having to take a medication every day.

After taking the medication and having dosage adjustments, I was still having the episodes. They were still happening more frequently and for longer periods each time. This was definitely not how I wanted or expected my first year of college to go.

I went to Auburn University, majoring in pre-veterinary medicine, because I wanted to be a veterinarian. I lived in an off-campus apartment with two of my high school friends, including the girl who gave me the piece of candy at Hollywood Connection the night I had to have an ambulance take me to the hospital.

I did my best adjusting to being a college student. I was taking a full load of classes and found a job on campus working at a smoothie shop in Haley Center. A lot of the freshmen classes were in that building, so I had some classes there. As a pre-vet major, though, most of my classes were science ones in a different building. Walking from one building to the other was something I had to plan out.

I’m sure most students don’t even have to think about it. They just walk to their classes and are fine. I, on the other hand, had to make sure I would have enough time to walk from one building to the other and take breaks as I was walking if I needed. I didn’t want to show up to class completely out of breath, huffing and puffing, so sometimes I would have to schedule my classes with an hour or so break in between to give me time to walk to the next class and catch my breath.

I would spend a lot of time making my class schedule, because I knew some classes would be across campus, so I could not just schedule them back to back. I hated showing up the first day of class and seeing a note on the door or board that said the class had been moved to a different room, because that completely messed up my schedule. If the class was moved to a different room in the same building, it was usually fine. If the class was moved to a room in an entirely different building, that was a different story. Sometimes, I would have to drop a class if that happened and find another one that was in a closer building, if that was possible.

Parking on campus was another thing I hated. Tiger Transit was available from my apartment complex, but in those days it wasn’t nearly as reliable as it is now. So, I would most often just drive to campus and park in the student parking lot across the street from the stadium. That meant more walking involving stairs or hills, which meant more opportunities for me to be out of breath and tired.

I had decided to go home one weekend, so after my classes on that Friday, I left campus and was driving on I-85N, when I started having an episode. It started with just the fast heartbeats, so I thought I could make it home. It was only about a 45-minute drive. I sped up, trying to get home faster. A few minutes later, I could tell my vision and hearing were starting to go out. “No! Why now?!?” I screamed. I was doing 80 mph and was still on I-85N. Just a couple more exits to go before I reached the exit I needed to get off of, where I thought maybe I could pull into a store parking lot and wait it out. Clearly, I didn’t have time to wait, because I could not, and did not want to, drive like this. So, I pulled off onto the shoulder of the interstate and put my hazard lights on while waiting for this episode to end. I put my head back, closed my eyes, and sat there, waiting and waiting. I wondered if anyone would stop to try to help me or at least see if I needed help. I refused to go back to the hospital for fear of being admitted and missing classes. So, I just sat there and waited, hoping everything would go back to normal.

It felt like forever as I sat there. Every few seconds, I’d open my eyes to see if my vision was back yet. I tried adjusting my breathing to see if that would help my heartbeats go back to normal. I was burning up, so I blasted the air conditioning as cold and high as it would go. Vehicles just kept zooming by me. I was simultaneously hoping for someone to stop to see if I needed help and hoping no one would notice me just sitting still in my car.

About ten minutes later, the beats started to slow and everything started going back to normal. I sat there for another minute to make sure. Then, I pulled back onto the interstate and drove home, like nothing had happened.

I could not tell anyone about this, especially a doctor, because I didn’t want anyone telling me I couldn’t drive anymore. How would I get to my classes if I couldn’t drive? Was I thinking about the possibility of blacking out while driving and getting into an accident and hurting someone else? Of course. Did I let that stop me from driving on a daily basis? Nope. I was definitely being selfish. I just wanted a normal life and to go to college. Why couldn’t I just do that like all these other college kids? Why was this happening to me? What did I do to deserve this? I asked these questions repeatedly with no answers.

At my next appointment, I told the cardiologist I was still having the episodes, even with taking the medication. He suggested a procedure called an ablation, but said I would have to go to Emory in Atlanta to have it done. An ablation is similar to a catheterization, but the doctor tries to induce an arrhythmia to determine where in the heart’s electrical system the irregular signal is coming from. If they’re able to identify the specific location, then they can burn, or ablate, that part to scar it so it’s no longer part of the electrical system, which stops the arrhythmia.

I was an adult now, so he sent me to a regular cardiologist at Emory to have it done. Well, I found out regular cardiologists do not know what to do for people like me who have a congenital heart defect. Regular cardiologists that normal people see only know how to deal with normal hearts. So, after seeing a few of them, and a lot of back and forth, they refused to do any procedures on me. I found out the day before the procedure was supposed to happen that they weren’t comfortable performing anything on me with the way my heart is configured. Instead, I had to go to see some pediatric cardiologists with Emory’s Children Hospital.

If I felt out of place as a young teenager at the pediatric cardiologist in Columbus, it was no where near as out of place as I felt being an adult and sitting in the waiting room at this children’s hospital. The waiting room for the pediatric cardiologist was packed with children and their parents, waiting for their appointments. When my name was called and I got up, I could see all the eyes on me, as if they were questioning why I was there or if I was in the right office.

I had a few ablations done at the children’s hospital. It seemed like once they did an ablation, I would be okay for a few months and then the episodes would happen again.

I remember sitting in a Biology lecture with about 100 students in the class. I was fine until I wasn’t. I was taking notes and my heart started racing, I got super hot, and I could feel my vision and hearing going out. That sick feeling was there along with the neck pain. I never left class for anything, but this time I hurriedly left and went to the bathroom. I tried to cool myself down and wait for the episode to stop. My roommates were in the same class with me, so after about 10 minutes one of them came to check on me. I was just starting to feel better when she came into the bathroom to ask if I was okay.

When we went back to class, I looked down at my open notebook and could see when the episode happened, because my handwriting completely turned to scribble while I was taking notes. In those notes and the scribble that came during the episode, I could tell I tried to fight it and just kept trying to take notes as normal, until I realized I could barely see my paper or hear the lecture.

Back to the doctor I went and another ablation was scheduled. They found another spot in my heart where there was an irregular electrical signal.

I had to schedule the ablations during holiday breaks or in between quarters/semesters. So, while everyone else was enjoying their time off from classes, I was in the hospital or having appointments or recovering from a procedure.

I was going back and forth to the hospital so much that I ended up moving out of the apartment before my freshman year at Auburn was over. I moved back home and just drove back and forth to Auburn and home. Thankfully, I didn’t have any more episodes while I was driving.

They did seem to happen more often during the day now, though. I had an episode during an English class. I remember it was an exam day. I had my blue book and was writing my essay responses in it. I had one more question to answer when my heart started to beat fast. I don’t think I finished that question, because my vision and hearing started going out, and I knew I had to get out of there. I grabbed my backpack off the floor and hurriedly turned in the blue book. The class was on the second floor of the Haley Center and was right by the stairs, so I slowly walked down the stairs, seeing just the edges of the stairs and blackness. There was a parking lot right behind the building, and by this time I had a handicap parking permit, because I never knew when these episodes would hit and if I’d make it back to my vehicle. In addition, I was having more problems breathing anytime I walked.

I made it to my car. I don’t remember if that English class was my last class of the day or if I just left because of the episode, but I sat in my car for a bit, blasting the air conditioning again, until I felt normal and then drove home. It never failed that after I had an episode, I had no energy the rest of the day. They just took everything out of me.

About two years in, I decided to change my major. I wasn’t sure I would ever be a veterinarian when I was struggling trying to just take classes and dealing with these heart issues. I had always loved reading and writing, so I decided to change my major to English. I thought I would be a writer. I never thought I would be a teacher. In order to change a major, I had to talk to my advisor. He tried talking me out of it. He said my grades were fine and didn’t understand why I would want to change majors if I wasn’t flunking classes. I didn’t feel the need to explain myself to him. I felt the only way I would be able to graduate with a college degree would be to do something that wasn’t as demanding as all the science classes and labs. My body just wasn’t handling them well as I seemed to progressively have more heart issues as time went on. And I certainly didn’t want to start flunking classes and messing up my GPA.

It took me longer than four years, but I finally did graduate from Auburn University with a Bachelor of Arts in English.

I was still seeing the cardiologist who would come to Columbus, just because that was one appointment I could do without having to go to Atlanta. He kept mentioning there was a cardiologist at Emory who specialized in adults with congenital heart disease. He wanted me to see her, so in 2006, I had my first appointment with Dr. Wendy Book at the Emory Adult Congenital Heart Clinic.

Through medical advances in technology and medications, more people born with congenital heart defects were living into adulthood, thus creating the need for cardiologists specializing in this area of care.

Dr. Book recommended I get a pacemaker, because not only did I continue having atrial fibrillation, but also my heart rate was slower than normal at other times. The pacemaker would pace me out of arrhythmias and also help my heart beat at a more normal rate than it was beating on its own. I got my first pacemaker that same year. It helped, but I also ended up having a few more ablations even after getting the pacemaker. The last attempted ablation I had was in 2017, but they weren’t able to induce an arrhythmia at that time. Since then, my pacemaker hasn’t captured any arrhythmias, even though I still feel fluttering or rapid heartbeats every now and then. When I tell my cardiologists, they tell me the pacemaker may not pick it up because they either don’t last long enough to be detected by the pacemaker or the beats aren’t at a higher rate than it’s set to capture. For example, my pacemaker may be set to capture anything above 150 beats per minute. If my heart beats at 130 beats per minute, I will probably feel that, but the pacemaker won’t capture it because it doesn’t meet the threshold setting.

With medication that I still take on a daily basis, the previous ablations, and my current pacemaker, my arrhythmias seem to be under control at this time.