When it rains it pours.
It was mid March. The very early hours of the morning, well before dawn. And very dark.
Waking slowly from a deep slumber, I was vaguely aware that something was very wrong. Part of me--the part that wanted to continue sleeping--didn't want to know what the other part--the part that was trying to wake me up--was trying to tell me.
Slowly the part trying to get my attention won; my conscious mind became aware of the situation, and I startled awake. My heart was beating wildly in my chest. I groaned and sat up in bed. This was not good. Trying not to wake our daughter Awesome, I woke my husband David.
We both knew this drill all too well. David stumbled over to the dresser to find the pulse oximeter, which soon revealed my heart rate to be 160 beats per minute. Having confirmed the crisis, David headed off to the kitchen to get several bananas and a handful of Medjool dates--both good sources of potassium. Meanwhile, grabbing my water bottle and sitting down on the floor, I began to chug water--just in case I was slightly dehydrated. Between gulps, I tried to concentrate on breathing slowly and deeply from my abdomen. Intermittently I also tried various of the vagal maneuvers I'd been taught (coughing, holding my breath and bearing down, etc.) in an attempt to stimulate my vagus nerve--the main nerve running through the body that acts as a kind of nervous system reset button (Incidentally, this is same vagus nerve targeted by the VNS--the vagus nerve stimulator--a device implanted in those with intractable epilepsy to abort and to control seizures). If I could stimulate my vagus nerve, then my heart would convert back to normal rhythm.
I've had occasional SupraVentricular Tachycardia (SVT) for nearly the last 30 years. Mostly my episodes happen in the wee hours of the night or the early morning hours before dawn. Typically, I wake from a deep sleep to find my heart beating very quickly--160 to over 200 beats per minute. These episodes happen in clusters every 6 months to two years. And then just as quickly as the episodes appear, they go away again.
On our first meeting, the man who would become my cardiologist--with an ironic twinkle in his eye--had simultaneously both horrified and reassured me by telling me that if my arrhythmia had, in fact, been dangerous, I'd already be dead. Since then, based both on catching one of my middle of the night episodes on EKG, and also on reading my ER EKG's, he'd repeatedly assured me that my particular kind of SVT--caused by an accessory (extra) electrical pathway in the AV node of the heart--was absolutely not dangerous, but was instead, simply a nuisance. Something that he said I'd find over time to be very inconvenient and also very annoying.
My cardiologist offered to rid me of my SVT nuisance with a procedure called a cardiac ablation, a procedure in which, after a heart catheterization, the accessory pathway is identified and then ablated--burned out with a laser. I was told I could schedule my cardiac ablation anytime I was ready to do so. But, seeing as the procedure came with the possible downside that, if things went badly during the ablation, I'd end up with a pacemaker, I wasn't eager. In fact, I'd declined his offer with a no thank you. I'd rather live with my nuisance than risk ending up with a pacemaker.
And so, I've lived with my nuisance for nearly 30 years. My cardiologist told me about the vagal maneuvers that could be used to convert my heart to normal rhythm. He also assured me that if things got bad enough, if my heart went so fast that its pumping became inefficient and oxygenation dropped enough, I would simply pass out; and when I did, that my heart would convert back to normal rhythm immediately--so I didn't need to fear during episodes. Still, having your heart pumping that fast for too, too long was simply not healthy. And so I was advised to head to the ER if I couldn't get my heart converted back to normal rhythm within half an hour to an hour. Sometimes in some people, it seems, medical intervention is needed to help convert the heart back to normal rhythm.
Over the years I've ended up in the ER about half a dozen times. And always, after I got there, before the ER doctor had had to intervene, my heart had spontaneously converted back to normal rhythm.
That night, though, as I sat there on the floor, all those tricks to get my heart back into rhythm weren't working. Awesome woke about 10 minutes into my efforts. Awesome tends to get really stressed out by my SVT episodes. It must be hard to wake from a deep sleep, groggy and disoriented, to see your mother in the middle of an acute medical crisis. And so that night she quickly became upset and agitated. She prayed. She worried. She stressed. She alternated between telling me not to die and asking me if I was going to die. She needed a lot of comforting and reassurance. And while, we assured her that everything was going to be OK, she worried that it wouldn't be OK--that something would go wrong and I'd simply be wrong and that I'd die right there. I am Awesome's rock. The pillar against which she leans. The mother that she counts on to sustain her emotionally in dealing with the challenges and uncertainties of intractable epilepsy. She needs me to feel OK. And so when I myself am in the midst of my own acute health crisis, it's very stressful for her.
None of this is good for Awesome's health. Stress and lack of sleep are both strong seizure triggers.
It was a terrible, no-win situation. The more she stressed about me dying, the more stressed I became worrying about her. I worried that she would stress herself right into a convulsive seizure. It would have been the perfect storm--Awesome having an acute seizure crisis while I was having an acute heart crisis. I could only imagine how much more that Awesome having a convulsive seizure right then might have raised my heart rate. And if she had a seizure, we would not be able to leave the house for half an hour or more--until she was conscious again. And I couldn't drive myself to the ER. So we'd need to call an ambulance. Which would be loud and disruptive to the neighbors too, and up the stress even more for both of us. And so as these scenarios went through my head and I worried about them, it became harder it became for me to relax and concentrate on slowing my breathing. All this was making it take longer and making it be less likely that I would succeed in converting my heart rhythm back to normal. And the longer it took to convert my heart back to normal rhythm, the more stressed Awesome became. It was a vicious cycle.
I was sitting on the floor, peeling and eating banana after banana, choking down Medjool dates, getting into various relaxing yoga positions, trying to concentrate on my slow breathing, chugging water, trying vagal maneuvers, and comforting Awesome in between it all. Trying to comfort your child in the midst of an episode was not easy.
Finally, I got out an oral syringe and tried a Modified Valsalva Maneuver. Always in the past, the Modified Valsalva Maneuver had worked like a charm. But tonight, even after three repeats, it didn't. Though it would temporarily bring my pulse back down into the 80's, my pulse would almost immediately bounce right back up into the 160's or 170's again.
Half an hour into this circus of mounting stress, Awesome was on the verge of tears, asking over and over again if I were going to die. It was clear that we needed outside intervention.
And so, I had Awesome get dressed. I got dressed--having Awesome help me do so seemed to calm her down somewhat. And David got dressed, and went to bring the car around to the front of the house. And in the darkness and the cold of the early morning, with my heart rate still in the 170's, we headed off to the ER. Arriving, Awesome walked into the ER with me, while David went to park the car. The ER didn't make me wait long. Right after David arrived in the waiting room, they showed us into an ER room, where I changed into a gown and was hooked up to an EKG. I was still praying that my heart would convert on its own. But it didn't.
More than hour had passed since my episode of SVT had started. After the EKG, a doctor came in and explained that they were going to stop my heart and restart it again, with a drug called adenosine. With David and Awesome sitting there along the wall in the ER room, they brought the crash cart in and prepared me in case something went wrong and they had to shock my heart to get it beating again. They applied self-adhesive defibrillator pads to my chest. The defibrillator was turned on and at the ready. It was all very intimidating for me, but I found myself worried more about the stress it was causing my poor Awesome who was sitting over there trying not to freak out at the idea of having her mother's heart stopped and restarted again. I kept worrying that she'd have a seizure in the middle of our circus. In fact, I wondered that she hadn't had a big seizure yet. Being sleep deprived, woken in the middle of the night, subjected to extreme emotional stress, and just being in a hospital setting were all strong seizure triggers for her.
The ante was upped even more as several additional ER nurses and doctors stepped into the room for the procedure--there in case something went wrong. The doctor explained that the adenosine had an incredibly short half life and that it would last only a few seconds in my system. So they had to push it quickly and all at once in my IV when it was time. They would be at the ready with the defibrillator in case something went wrong. I would feel an incredible pressure in my chest when they pushed the adenosine, but that it should pass very quickly. And it should convert my heart back to normal rhythm.
The adenosine was an experience I never want to have again. There was an incredible pressure in my chest. It was like an elephant sitting on my chest, but somehow pushing my body from the inside out. The pressure was overwhelming. It started in my chest, but then traveled to my abdomen and into my legs and down to my toes; simultaneously the incredible pressure was also in my lungs, traveling to my shoulders, arms, hands, and fingers; and so too it the pressure was in my head. It was all very overwhelming. It felt like I was being crushed or about to explode from the inside out. I cried out with a loud moan and asked the doctor to take my hand. She did. And then it was simply over. And my heart rate dropped only from 170 down to 130. All of the nurses and doctors were staring at the screen where my vitals were displayed. And there was a quick muttering about another dose of adenosine when the supervising doctor said, "No, no, I think we're just seeing anxiety now. I think it did it. Give her a minute to calm down." And thankfully, she was right. My heart rate began steadily dropping until it was down to 90. And over the next few minutes it got down into the 80's.
And the crowd in the room at the ready to shock my heart back into beating if it stopped, thinned out. And there were only two or three medical personnel left--the doctor among them. Awesome declared a loud relieved "Thank goodness!" She then bowed her head and prayed in thanksgiving. And I declared that that was the first and last time I ever wanted to experience adenosine. After an x-ray (which was clear) and a few other tests and waiting around for forever, and seeing a cardiologist as a consult, and talking to her, and then seeing a third doctor, the clock was ticking towards 12:30. We were still being told it was not clear when exactly we'd get to leave.
It was Thursday, a regular school day, and David had to be at the university at 1:30 to teach. I was in no condition to drive--and anyway, we had only one car. Awesome was sleep deprived and so, seizure prone. When it rains it pours. On a normal day David would simply have left to go teach and have taken Awesome along, parking her in the front row of his lecture hall where he could keep an eye on her in case of a seizure. It would have been somewhat anxiety-inducing, but very doable.
But as luck would have it, his university was having an "Active Shooter Drill" that day. There would be an actor on campus mimicking an active shooter--even shooting off blanks for true effect. It was a controversial drill and many students objected; several in David's class had already expressed that they would be skipping class that day due to the drill. "Hide, fight, run," were the buzzwords the university had been promoting in preparing the students for the drill.
The evening before, David and I had sat and talked through what the strategy should be with his students. Since his building was on the edge of campus, divided from the nearby woods and sheltering embankment by only a single road crossing, we'd decided that if he could lead his students--like Moses leading the fleeing Israelites--in the cover of the bushes, to the edge of the building and then quickly across the road and into the shelter of the bushes and trees, then it would be an easy thing to get them off-campus and out of danger. The lay of the land would help because once they were into the bushes, they'd be out of sight completely because of the way the land fell away, sheltering them behind the hill. We agreed that he would then lead them down a couple of back streets and bring the whole class to our house a quarter of a mile away--where they'd be off campus and out of danger. Never in my wildest dreams would I have imagined having to sit down with my husband to plot out strategies to save his and his students' lives in this way. But there we were. These are the crazy times in which we live. At any rate, David was very stressed by anticipating the Active Shooter Drill and the affect it would have on his students. When students are already stressed by the possibility of a school shooting, why act it out so realistically? What could be learned through such a drill? An Active Shooter Drill seemed to only ensure that students and staff ended up with PTSD from the drill itself.
Now what of taking Awesome--already sleep deprived and stressed--onto campus and putting her in the midst of the Active Shooter Drill? Our daughter who had just been through the trauma of watching doctors stop and restart her mom's heart, was now going to be listening to shots fired, be running from bush to bush, hiding, and running for cover while an actor toted a gun shooting at students? It was a prescription for disaster and for trauma. Taking her onto campus today was unwise. And so, if Awesome couldn't go to the university with David, she'd have to stay with me at the ER. But I had visions of me trying to give seizure first aid--keeping Awesome from falling, administering emergency medication, and keeping her head from repeatedly hitting the ground, all while I was in my hospital gown, trailing EKG leads and an IV. No. No. Just no. And so, David finally called it and canceled his class. Legitimately. For good reason. So he could stay with me in the ER. And we could keep Awesome off the university campus. But the truth is, it was also a huge relief to him--and his students--that they would not have to be on campus during the Active Shooter Drill.
Shortly thereafter, just when we started to worry about the fact that it was heading towards 1 PM and Awesome had had nothing to eat--low blood sugar can also be a seizure trigger--I was finally getting discharge instructions. I was to take it easy that day. The ER had already made an appointment for me with my cardiologist the very next morning--I needed to keep the appointment. We were finally out of the ER a little before 1 PM, heading home and needing to get Awesome some lunch as soon as we did.
Everything is harder with Epilepsy. David and I agreed that we just couldn't reasonably subject Awesome--with intractable epilepsy--to another experience like the one we'd just had. It was simply too stressful for her. And even if we didn't end up in the ER, Awesome didn't need any more middle of the night, sleep-deprived drama; she didn't need to be worrying about me dying. We had gotten lucky this time in that she hadn't had a seizure in the midst of it all. But we might not be so lucky next time. And the possibility that David might end up having to handle two medical crises at the same time--Awesome seizing while my heart was going crazy--was also over-the-top.
We could't solve the problem of Awesome's intractable seizures right then. But we could easily solve the problem of my SVT. It was simply time to schedule my cardiac ablation. I told my cardiologist the next morning--Friday morning--that it was time. I wanted to go forward with my cardiac ablation. Almost as if it were a confirmation, while I was in my appointment with the cardiologist, David called to say that Awesome had just had a seizure. We just couldn't keep taking turns having acute medical crises. I needed to stop having my medical dramas. And so my cardiologist, because he no longer did cardiac ablations, scheduled me to see a younger cardiologist in their large and very excellent practice, the following Tuesday. I had only to wait through the weekend and Monday.
I saw the younger cardiologist on Tuesday and told him that I was ready to schedule the ablation. After reviewing my records and talking to me, he agreed that an ablation was in order. Because he was going out of town on vacation the next week, I either had to schedule the ablation for the very next morning, or else I'd have to wait weeks or even a couple of months to do it. Logistically, David needed to be off work and we needed another person there to help too. One person would have to stay home with Awesome because she can never be alone because of her seizures--someone has to be ready to render first aid and to closely monitor her. And one person would have to be available to take me to the hospital very early in the morning and stay there with me as required. It just so happened that David was currently on Spring Break and one of our sons--who is a PhD student in another state--was also on Spring Break and home for the week. Having an ablation the following morning would work out well for us. If we didn't do it then, the next time David would be off work during a weekday and someone else would be there to help, wouldn't be until May. And so with the cardiologist's permission and approval, I elected to go forward with the ablation the very next morning. I would need to be there at 5:30 AM for a 7:30 AM procedure.
There wasn't much time to be nervous about a procedure I'd put off for 30 years. Things were a little surreal because they happened so quickly, Less than a week after ending up in the ER, I was back in the same hospital for a cardiac ablation. Our son Peter took me to the hospital and stayed with me. And the plan was that later, after Awesome woke, both David and Awesome would join Peter and I at the hospital.
I was told that the ablation was a potentially long procedure, up to 6 hrs long. They would be inserting four catheter lines through four places--two on either side--of my groin and threading them up to my heart. Once there, they'd have to induce my heart into SVT--to have an episode of beating too fast. And then they'd have to find and ablate the accessory pathway. And get the SVT stopped. Then they'd have to try several more times to induce my heart into SVT again. All this could take a long time, depending on how easy or hard it was to induce SVT. And there were other possible complications that could happen along the way. Though the odds of these things were low, some could be quite serious and even deadly. If any of these things happened, there would be additional procedures that would become necessary.
Thankfully, they sedated me to keep me relaxed, almost as soon as the IV was in. And so, I was relatively calm. I said my good-byes to Peter and they took me to the procedure room. I remember being asked to climb up on a narrow bed with a glass part. They were putting a warm air blanket under me. There were lots of people in the room. At least half a dozen. And they were having trouble with equipment malfunctioning. They put the same things on me to prepare me for the paddles in case they had to restart my heart. And they had just decided to put new stickers on me and asked me to sit up again, when the last thing I remember someone saying is that I shouldn't worry about falling, that they would catch me--and I remember thinking that why would I be worried about falling when I didn't feel the slightest bit drowsy or woozy. And the next thing I knew I was waking up in the recovery room.
Things are fuzzy then in my mind. I can't remember where I was and the sequence, but at some point I was simply back in the same room where I'd said good-bye to Peter. And he was there. And David and Awesome too. And the cardiologist came by and said, "It all went perfectly." The whole procedure had taken 90 minutes. They had no trouble inducing SVT, no trouble finding the accessory pathway, no trouble ablating it, and that all should be fixed. I merely had to take care of myself and rest for a couple of days. And he'd see me in a few weeks after he was back from vacation. A few hours later, I was discharged. And it was all over.
In the days that followed, it was like a weight had been lifted. There had been two of us in the household--Awesome and I--who were prone to acute medical crises. And now there was only one--Awesome. We were clearing the deck to make our lives a little less insane.
A week later, Awesome, after having seen how my acute medical crises had been eliminated through surgery--even if anticipation and the surgery itself had been a little scary--began to ask questions about the possibility of going forward with her own pre-surgery work-up for epilepsy surgery.
It's something her epileptologists have had on the table for the future, but they'd wanted to wait for various reasons, among them to give Awesome time to mature and be more motivated and invested, considering all that she would have to go through. But having gone through this all with me. Having seen me struggling with acute crises, having seen the scariness of the ER and adenosine, and then the whole surgery process including the benefit afterward, it is all much more possible in Awesome's mind. Awesome is now ready and willing to start the pre-surgery process.
We saw Awesome's epileptologist yesterday. He agrees that it is now time to start the pre-surgery process. We're in the process of scheduling an appointment with her other epileptologist, the one who will take us through the pre-surgery process. Hopefully we'll get a time-line for the pre-surgery process at that appointment, and maybe get started with the process this summer.
It's all very scary, but also, potentially hopeful. We've had our share of acute medical crises. We're now hoping that a long term solution will be possible for Awesome as it was for me.
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