Confidence in my heart….

I haven’t written in a while. To be completely honest I haven’t been feeling well mentally. But I realized something today, something I’d like to share.

I think we all need a gentle reminder to not only be kind to others but to be kind to ourselves. It’s frustrating that we need reminders, but I think it’s absolutely necessary.

While having a conversation with a friend, the topic of confidence came up. He asked why I didn’t have confidence. I simply stated that it was because I didn’t like the way I looked. He was sure that there was at least one thing I loved about myself. I told him I wasn’t happy with my weight, I didn’t like any of my features. I also said that looking in the mirror was difficult, seeing pictures of myself, even more difficult. I just assume if I’m not happy with those things, no one else would be.

I then said that the only thing I’m confident about was on the inside. He looked at me equal parts confused and intrigued. I explained that as corny as it sounds the one thing I love about myself is my heart. I told him that I knew my heart was good, great even.

Despite anatomical and physiological flaws, my heart is, indeed, the one thing that I love about myself. I’m confident in knowing that the love that comes from my heart is unconditional. Love and kindness both come from the heart and I enjoy giving both so freely. It’s what makes me happy.

The lack of confidence in my physical appearance is tied to many years of being bullied, rejected, and judged. But that never stopped me from being kind and giving love, even if it was truly undeserved. That’s why I love my heart. Although it has seen and felt hate, it never held onto it.

I was genuinely happy speaking about my heart and how proud I was to have always used it for good. Then I became sad. My heart is failing. Which means one day I’m going to have to say goodbye to the one thing that I love about myself. I realized that this was what had been hurting me all along, I just couldn’t vocalize it until now.

Ever since being told I was in heart failure my mental health has been all over the place. I thought it was because it took away my career. Then I thought maybe it took away my youth, or even my chance at having a family. Although it did take away those things, that wasn’t why I was upset. Those just barely scratched the surface. I was upset because the one thing in my life that I knew would never let me down, was failing.

I will leave you with a quote of my own.

“A failing heart still holds love, and that will never change” -Kate Binnall

Be kind,

Kate

First Ablation….

August of 2017 was my very first ablation. It was also the first time I had felt hope since falling ill.

I was admitted to Brigham and Women’s Hospital a few days before the ablation. I had to come off some of my medications while being monitored.

To say I was scared would be an understatement. But as scared as I was, I was equally hopeful. Sometimes when your suffering for so long you start to fantasize what it feels like to be healthy. I felt closer to that fantasy in the days leading up to my ablation. I felt that if there was one consolation to being sick for so long, it would be that I would come out of that procedure better than I had ever been.

The procedure was going to be endocardial and epicardial. Endocardial ablations are more typical. They use catheters through your groin and go up into the heart and ablate inside the chambers. Epicardial is not as common. It is when they go through the skin below the sternum and break through the protective sac surrounding the heart and ablate the surface of the heart. Epicardial comes with more risks but I was in great hands.

Before ablations they have to map out the electrical system of the heart. They do this to find the spots that are misfiring so that they can target those spots and ablate them. I HATE the mapping part. They use medications and sometimes your own defibrillator leads to induce the bad rhythms so that they can target those areas. You’re usually awake for this part because sedatives make your heart lazy and the bad rhythms they want to come out will be masked.

When I was wheeled into the EP lab I was extremely nervous. I had just said bye to my mom, which no matter what, every time I go under anesthesia it doesn’t get any easier. The room was full of monitors, full of people, it was cold. I had nurses putting loads of stickers on me including defibrillator pads.

The tears started to roll down my face as the reality of what was happening hit me like a ton of bricks. The nurse told be it would be ok. I laid there while they made my heart do the very things I was trying so desperately to avoid. That’s when it hit me. Nothing prepared me for what happened next.

I was shocked twice in a row by the external pads. Talk about pain. Talk about absolute paralyzing fear. They did their job, I was in a dangerous rhythm, but it was being induced in a controlled environment. They don’t shock people with defibrillators if they are awake because it is extremely painful and traumatizing. I guess in some cases they may have to because pain and trauma is a lot better than death, but you’re usually either unconscious or in a hospital setting sedated prior to shock. The nurse apologized and then I was out.

The procedure took about 10 hours. I don’t remember much once I woke up. I remember being in so much pain. Pain that made me beg for anything to put me out of my misery. I think it was a healthy mixture of being shocked twice by external pads, the ablation, the heart biopsy they also did, or just the fact that I had been in one position for 10 hours, with 6 more to go. You have to lay flat for 6 hours after the procedure.

The doctor that did my ablation came to see me the next day. He was getting on a flight after he left the hospital to move to Nashville to his new job. I was officially his last case in Boston.

Recovery was slow but after about two weeks I noticed a significant difference in my symptoms as in, I had none. He gave me my life back for 10 months. It was the greatest 10 months. I hiked, I kayaked, I danced, I took the stairs, I exercised. I was “normal”. I could breathe when I walked. I could carry my own laundry up the stairs. I could make my bed without having to sit 4 times due to dizziness.

Most importantly I was ready to live my life. I started applying for nursing school. I got accepted and had the choice of two summer courses that would lighten the 6 course load in September. I was working full time and taking two classes without issue. The very same class that I took by itself when I was sick a few years prior and had to be taken out of the school by ambulance on a test day because I was out of rhythm and almost passed out. My body could handle it. It was the best feeling.

In June I started to notice some PVC’s coming back more often. I ignored them because they didn’t feel terrible. They also didn’t scare me because I had convinced myself that I was fixed.

Ignoring the PVC’s didn’t make them go away.

Shock to the heart….

My very first shock. January of 2017. I remember like it was yesterday. I was getting ready to head to my friends house for a sleepover. I remember feeling completely fine that entire day. I got into my car and buckled my seat belt. Before turning the key I didn’t feel well. My heart was really acting up. I picked up my phone immediately to dial my mom but my phone rang and it was my friend asking what time I thought I’d be over, before I could answer the connection was lost. One second later I was shocked.

I felt like a bomb went off, my ears were ringing and although the pain is quick, it is intense and shocking (no pun intended). I wasn’t “with it” I couldn’t think. I actually remember looking around my driveway for signs of an explosion. When I came to I remembered not feeling well and knowing I was physically in trouble. My phone was still in my hand and I remembered trying to dial my mom as quick as I could (which occurred often when I was in bed alone and would feel like I was out of rhythm, I’d call her because I was scared). That’s when it dawned on me that I got shocked.

I did what you’re not supposed to do. I got out of the car and sprinted into the house. I was hysterical. My mom was asking what was wrong, I kept saying “I was shocked” over and over again, but she heard “I was shot”. She was padding me down to check for blood. I remember being so petrified and so aggravated that she didn’t know what I was saying the next the next words that came out my mouth were aggressive. I said “I WAS SHOCKED BY MY DEFIBRILLATOR”. She said “oh, ok sit down, what do we do”, I told her to call 911. By this time my brother came down to see what was going and I remember him just telling me to breathe.

Even though I was told by my EP that if I’m shocked and feel fine after I don’t have to call 911. I can call the clinic or on call doctor. But it was my first time and I had chest pain (from the shock) but it was enough to want medical attention as soon as possible.

The EMT’s arrived. I live in a small town, and that’s not to say they don’t see everything but it was clear by their expressions that they haven’t seen a rhythm like mine before.

I got to the hospital and a Medtronic (my device manufacturer) rep was called to come interrogate my device. It was an appropriate shock. I was in V-tach for 26 seconds. My heart rate was 270 bpm. It tried pacing me out of it three times but after all pacing failed it charged for the shock.

After a shock you lose your license for 6 months. But that’s not all. I went into depression, my anxiety was through the roof, and I was exhibiting symptoms of PTSD. All are normal for patients with defibrillators after receiving a shock.

I got my license back mid July. I think I drove for two and a half weeks before I was shocked for the second time.

This time, it was the day of my best friends wedding. All the girls stayed in a hotel room together and we got up the morning of the wedding and we all wearing matching shorts and tank tops. We were taking a limo to a salon for our hair and make-up. I kept going back and fourth about putting a wash off self tanner on my legs. I was scared I would sweat it off onto my light colored bridesmaids dress. I took a shower and shaved my legs, I got a little dizzy but nothing I haven’t had. I got dressed and came out of the bathroom with the tanner and the mitt to apply it. I said to my other friend there that I decided I wanted to tan my legs. The next thing I said was “I think I’m going to pass out”.

I lowered myself to my knees and laid down on my stomach. I was a jokester so it wasn’t taken seriously at first. My friend actually put the mitt on and got the tanner ready and just assumed I wanted him to do the back of my legs. My body jolted from the shock, and they started to call my name. I didn’t answer so they realized I was serious, and that it was serious.

I regained consciousness but could barely lift my head. I could hear them on the phone with 911, but I couldn’t say anything. I didn’t want them to call 911. It was my best friends wedding day, I didn’t want to ruin it. I tried talking but nothing came out. They got me sitting up and drinking some water while we waited for help to arrive. I was so confused. It was the weirdest feeling. I remember asking for a toothbrush. I was always worried about going to the hospital unprepared. I almost didn’t know my name, though. Thankfully, David was a nurse and he knew what was wrong with me and what medications I was on.

I was wheeled out of the hotel while I repeatedly apologized to the bride. I got to the hospital and a Medtronic rep was called, it was an appropriate shock. This time ventricular fibrillation at a rate of 250 bpm. With v-fib the heart just quivers, it doesn’t pump blood, you lose oxygen and that’s why I passed out.

I managed to make a deal with the ER doctor. I could leave as long as I promised to take it easy and call 911 the second I didn’t feel well. David took me to the salon where I had just enough time for hair and make-up. My primary concern was to be in the pictures, to have that memory. I was in the pictures. I’m so glad I powered through. I was exhausted. It takes time to recover after something like that, sometimes a couple days. So I wasn’t much fun at the wedding but I got to see my best friend marry her soulmate and that’s all that matters.

That’s probably my most badass story.

When things started to progress….

Somewhere during 2015 I had an episode of ventricular tachycardia that was alarming to my EP doctor. EP stands for electrophysiologist. They are doctors who specialize in the electrical activity of the heart. My heart rate went up to 310 beats per minute. Normal heart rate at rest is anywhere between 60-100 beats per minute, a little less in athletes. I was at that rate for a little over 20 seconds. I know to most of you 20 seconds sounds like the speed of light, but 20 seconds at a heart rate of 310 bpm is alarming. I should’ve passed out. But I didn’t. My settings were changed on the defibrillator and my medications were adjusted but this was the first time a possible ablation was on the table. Luckily, I responded to the change in medications. I continued my daily life.

Towards the end of 2015 going into 2016 I started to notice more and more symptoms. That’s when I wore an event monitor for 30 days to watch my heart. I wore another one for another 30 days shortly after the first. I was having a lot of PVC’s. A PVC is a premature ventricular contraction, benign and experienced by a large part of the population. They become a problem the the PVC burden is high. Mine was. Then you get into bigeminy, trigeminy and quadrigeminy. Depending on if there are one, two, or three normal beats between each PVC, the rhythm is called bigeminy, trigeminy, or quadrigeminy. After that it turns into ventricular tachycardia.

The truth is, I’ve never been able to explain what it feels like. All I know is that it’s miserable. I would have a normal beat, then two PVC’s in a row, then maybe two normal beats and three PVC’s in a row then a 6-8 beat run of V-tach. It feels like you can’t catch your breath. If you add exertion with that, it feels like you’re going to pass out.

NSVT stands for non-sustained ventricular tachycardia, which means it doesn’t last, which also means it doesn’t require a shock. This is what I called “having runs”. To most people having runs means diarrhea, but it was my way of communicating that I was not in a normal rhythm. I would also say that “I’m out of rhythm” which just simply meant that I wasn’t in a normal sinus rhythm.

In July of 2016 I was scheduled for my first ablation. An ablation is when they go in and study where the irregular rhythms are coming from and they burn those spots in the heart. EP’s can tell the morphology on an EKG but they have a high tech mapping system that they use prior to and during the procedure. This system maps where the heart is misfiring beats.

I arrived at the hospital with my mom, dad, and brothers in tow. I was briefed by the two doctors doing my ablation. They said they won’t know until they get in there if they’d be able to do the ablation but I needed a new defibrillator because the battery was low so I was looking at a procedure regardless. I went in blind, which honestly made it less nerve wracking. I didn’t know if I’d wake up after an ablation or if I’d wake up after a battery change. Of course I wanted to wake up after an ablation because that would be the procedure that could make me feel better.

I woke up and was told that they put a new defibrillator in. I was under anesthesia so honestly, nothing mattered. But when I came too I felt defeated. My doctor explained to me that I have polymorphic ventricular tachycardia, polymorphic meaning more than one morphology. Monomorphic ventricular tachycardia is a bit easier to ablate. He said the mapping system lit up like a Christmas Tree. They weren’t comfortable. They wanted me to see a doctor at Brigham and Women’s Hospital. They said “he’s the guy for the type of ablation you need”.

As defeated as I felt, I was so impressed with my doctors honesty. It’s not often for them to accept defeat either. But he truly didn’t want my life at risk for something he wasn’t 100% sure they could do. Trust was built with the strongest foundation that day. A lot of people may have looked at it differently but I didn’t. I was so grateful to have an honest doctor who I knew had my best interest.

I was sent to an EP doctor over at Brigham and Women’s Hospital soon after. He wasn’t sure if he wanted to try a medication called Quinidine or if he wanted to do an ablation. Either way he wanted a full work-up on my liver because the Quinidine metabolizes in the liver, so mine would have to be healthy. Bloodwork, Ultrasounds, CT scans, and a Liver Biopsy later I was cleared. The biopsy was the last step to clear my liver. That was in April of 2017.

We were ready to move forward but the doctor decided that he wanted to do an ablation. The ablation was scheduled for August of 2017. We didn’t have a set date but we knew it would be August.

What happened during 2017 tested me in every way possible.

Living With an ICD….

It took a long time to trust my device, and to be honest I still have those issues. I was holding onto what the doctor said. He said “you may never need this, but we have to be cautious”. I convinced myself that I wouldn’t ever need it. “My heart wasn’t going to give out on me”.

The immediate years following my diagnosis were filled with the normal bit of depression and anxiety from learning about a new life-threatening illness. But they were also filled with wrapping up my senior year. Lots of good memories, like winning prom queen and graduating with so many friends.

I knew that I wanted to be a nurse but I didn’t do what I had to do to get into a 4 year program following high school. It’s not something that I could’ve afforded anyways. I spent the summer hearing about what everyone else was doing. That’s when I started to feel pressure. Through online research, I found out about medical assisting. Before you know it, I was in a 10 month program. I loved it. For once in my life I wasn’t an average student, I was a great student with awesome grades. It only solidified my interest in the medical field. I starting working as a medical assistant after completing an internship. This is where I’d be for years as I worked slowly towards a nursing degree.

I went years without major issues. I would have an episode or two a year with the very same symptoms I had the day I went to the hospital. I was always admitted and watched for the few days it took before I was back in a normal rhythm. That’s all. Everything else felt normal.

In 2014 I lost my appetite completely for over a week. I felt something was wrong, so I went to Urgent Care. I had a Abdominal CT Scan, which showed I had a massive spleen (yes, that was the wording on the report). What did this mean? We didn’t know. The urgent care doctor wanted me to follow-up with my primary care doctor the following day.

When I saw her she said she will check my blood for various causes, if it’s all normal she will send my to a surgeon, if it’s abnormal, she would send me to a hematologist. Everything came back normal. It was off to a surgeon.

When I saw the surgeon, he reviewed my CT images. I had also obtained a CT scan done in 2014 of my abdominal cavity for a ovarian cyst rupture. While comparing the two he realized it had grown quite significantly, but presumably slow. This is where I had my first cancer scare. He said that I needed to see a hematologist to rule out lymphoma and leukemia.

I saw the hematologist a few weeks later. Good news, no lymphoma and no leukemia. But during a physical exam I showed signs of pain with guarding when my liver was palpated. They brought up the CT images and confirmed that my liver was also enlarged.

This is when she suggested to me that there could be an explanation to all of my symptoms. This is when I learned about Lysosomal Storage Diseases. They are inherited metabolic diseases that are characterized by abnormal build-up of toxic materials in the body’s cells resulting in enzyme deficiencies.

She only knew how to test for two of the more than 50 that existed. They were the more common and would link my heart issues with my now massive spleen and enlarged liver. Gaucher’s and Fabry Disease. Both treatable with enzyme replacement therapy. I had hope that I had a diagnosis that came with an effective treatment. Both were negative, but I sent to a genetic doctor for more testing of the 50 plus types.

I was sent to a geneticist at Mass General. I think I met with her once and maybe had one more visit via Skype in over a year. I needed something quicker. I found a geneticist at Brigham and Women’s Hospital that agreed to take my case. Within 3 months I had the results of the panel of Lysosomal Storage Diseases, and within 6 months I was drawn for Whole Exome Sequencing (WES). I was told it would take a very long time to even get approved for that test by the previous doctor, but this geneticist at Brigham and Women’s not only got it done in 6 months but also had the Hospital agree to pick up the cost of insurance denied it. $36,000 dollars to have myself, mom, dad, maternal grandparents, and maternal aunt tested.

All the women had a mutation of the ANK-2 gene. The gene itself, has been linked to specific heart issues but the mutation we had was “of unknown significance”. I was referred to a cardiac geneticist after genetics did all they could. In the meantime, the diagnosis of Brugada Syndrome was taken off the table.

I felt like a lab rat, who so desperately wanted a diagnosis.

Seven words….

In February of 2009 I became ill. I was in history class, in my senior year of high school the week before February vacation. I was sweaty, short of breath, and was having palpitations. I went to the nurses office where I was told I had elevated blood pressure. She said it was nothing to worry about but it should be something I follow-up with my primary care doctor. I felt better and finished the school day.

I went into work later that evening and was standing when the symptoms returned, only this time I felt dizzy. I had never passed out, but if I had to guess what a pre-syncopal episode felt like, that would be it. I was sent home and my mom and I decided it was best if I was seen at the local emergency room. It was there that my life changed forever.

Seven words strung along in a sentence that held so much power. In that moment I didn’t know what those seven words were going to mean for me. “There is something wrong with your heart”. There they were, and that was the start of it all.

I remember my mom, who so badly wanted it to just be symptoms of anxiety, visibly scared. She didn’t want to hear those words either. None of us did.

They couldn’t handle my care there and needed to send me into Boston. It was late and I’m not sure the hospital I was being transferred to had a bed or if they were waiting on a transport team, but I was admitted for the night and transferred out the following morning.

It was my first time in an ambulance. I remember the paramedic and EMT like it was yesterday. It was the longest ride I’d ever taken. Seven words created one million thoughts and my mind was racing through them faster than the speed of light, it seemed.

We arrived at Tufts Medical Center where I was brought to a room on North 6 with my mom in tow. We were immediately welcomed with open arms by the nurses and techs. Of course with protocol, I was poked and prodded and asked the same questions over and over again. I started, one by one, meeting the team.

They started to explain what was found on my EKG and what it meant. I was showing an abnormal heart rhythm consistent with Brugada Syndrome. In layman’s terms I was showing a rhythm consistent with a syndrome also know as Sudden Death Syndrome.

I spent the weekend with not much to do rather than worry, but we had a plan for Monday. I went through a multitude of tests that following week. Brugada was, and probably still is considered to be a new syndrome. That’s not good in the medical world, because that also means there is not much knowledge about it. Tests were coming back somewhat normal except for a mildly reduced ejection fraction on an echo which indicated a cardiomyopathy but they were hoping it was viral.

My testing ended with an EP study. Aka Electrophysiology Study which tests the electrical conduction system of the heart to assess the electric activity and conduction pathways of the heart. During this test they would try and induce the bad rhythm and if they were able to then I would wake up with an implantable cardioverter-defibrillator (ICD). We were told that the EP study could take anywhere from 2-6 hours and the ICD, if needed, would take about an hour.

That was the first time of many that I’d be wheeled away from my family to go under anesthesia. I was 18 years old. I was old enough to sign my own consent forms, but I didn’t feel old enough to understand or even comprehend the risks. That was also the first time I’d ever seen a procedure room.

I immediately felt intimidated by all the staff and equipment, all the questions, electrodes, IV’s, defibrillator pads, and timeouts. I was terrified. I kept thinking to myself “I wonder if I have to do this?”, “I wonder if I can change my mind?”. I laid there, completely still, paralyzed by fear and with tears rolling down my face. The nurses were wonderful and have become such a huge part of my life now but in that very moment I couldn’t focus on anything other than the fear. Then I was asleep.

I woke up with bright lights shining in my eyes. I had a couple doctors standing over me scraping, and pulling away at my chest. I wasn’t in pain but I felt a lot of pressure. They didn’t notice I was awake and I convinced myself that they were trying to save my life, I thought there was a complication and they had to crack my chest. I couldn’t talk, I couldn’t move, but a few tears came rolling down my cheek and the anesthesiologist noticed I was awake. I was told that everything was fine and then I was asleep again.

I woke up with a defibrillator. Something I had to learn to live with and to trust with my life. Try convincing someone with anxiety that a pager-sized device is going to save my life. I was told I was safer than when I came in. I of course agreed with them and didn’t fight it, but I didn’t believe it. I couldn’t wrap my head around that. I was discharged home the following day, and returned to school that following week.

Seven words changed my life, but I had no clue what was to come.