Welcome to my Heart 2 Heart Series featuring existential reflections of the narratives of my heart stories and those of my children and how these stories impact me, my wife, family & friends. Glad you have joined me on this introspective journey.
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Back in March, 2022, I traveled to Las Vegas to visit son and pick up my Prius. My son is using the Prius while he attends college. My wife and I were headed to Utah to visit Zion and Bryce Canyon national parks. When I drove my son to UNLV in the summer of 2021 in that Prius, I hiked Zion with him. I had a difficult time. I was winded, fatigued easily, very overweight and out of shape. It was at that point I decided it is time to start to take better care of myself. My wife and I joined a local health club, started to eat healthy by purchasing meals from sun basket and I began to track my calories then saw a steady decline in my weight over the first several months. Coming back to Zion and hiking the same areas was a test to see how much improvement I made. And I made improvement. I felt great while hiking.
In May of 2022, I traveled to Seattle to visit my daughter, Sierra. We hiked Olympic National Park. I was at the lowest weight I had been at in years, very consistent with my workout routine and very excited to see how my newfound health would “play” at yet another National Park. However, I struggled. I had difficulty keeping pace with my party. I would often lag behind, having to stop frequently to catch my breath. I felt bloated and uncomfortable. I was fatigued. My legs and feet swelled. As I sat in the National Park viewing God’s handy work I was frustrated. These symptoms have been present for a while and my doctors, both my primary care and my cardiologist, were paying attention to and monitoring these issues. I though for sure that a better diet and exercise would help my health.
In May I was teaching on campus for the first time since the pandemic started in March of 2020. One day I was lecturing and walking about the space and suddenly became lightheaded, needed to sit down, was concerned that I freaked out my class and found myself dizzy and somewhat disoriented. I’m not sure to this day if the class was aware of what was occurring or not. It got my attention, that’s for sure. Again I brought this situation and symptoms up to my care team. Needless to say in June when the semester ended I did not sign on for another class and have not done so to this date as I endured a very unpleasant experience.
I also noticed that I was getting winded and lightheaded when working with my clients via telehealth. Just getting excited and motivating my clients or celebrating there wins was difficult. What the heck?
In July of 2022 I traveled with my daughter and wife through the Southeastern United States. We ventured to and through Tennessee, North Carolina, South Carolina and Kentucky. It was a seventeen day trek visiting nine different cities, three different national parks and spending time on the Atlantic Ocean. I had strolled and hiked along side of the to Pacific Ocean just three months earlier and felt very blessed that I was able to travel as much as I had in the last ninety days.
I began to notice new symptoms appearing: upper chest squeezing and tightness, pressure in my sinuses, higher blood pressure readings than normal, not so much of a flutter rather a sensation that someone was squeezing my heart then releasing it, then squeezing again quickly and holding it tightly then releasing. I had shortness of breath and fatigue onset more rapidly. Upon my return I immediately spoke to my physicians and they ordered additional testing which led to a diagnosis of atrial fibrillation. I had also noticed that my weight gain fluctuated with greater range within a 24-hour period. I would gain as much as six pounds throughout the day then lose four or five of them in the evening when I would sleep.
In October I traveled to Denver, almost immediately after the echo and EKG identified the atrial fibrillation. The unpleasant and uncomfortable symptoms remained. Every time I became active, including getting up to get a cup of coffee or talking on a zoom call, I might feel the chest tightening, pressure in my sinuses, shortness of breath, fatigue, lightheadedness and the sensation that I was a beach ball ready to pop. There’s something that’s not quite right here I kept thinking to myself. I suggested to my wife that I seek a second opinion. When I went to visit my cardiologist after the trip, I didn’t have to seek a second opinion as he didn’t treat me he referred me to a specialist’s specialist. In other words, he referred me to a cardiologist who specializes in congenital heart defects and specializes in adults. So double board certified cardiologist.
After the initial meeting with the referred physician, which went which went very well. The meeting solidified my impressions of my health and the real issues. It was clear that my pulmonary valve, which was defective at my birth, needed to be replaced. My pulmonary valve, the one God gave me, was retrofitted or modified by doctors in 1971. Usually that leads to a full replacement when the patient is an adult. Something I was told by a cardiologist when I was in my twenties would occur when I was in my fifties. So, I was expecting this all along yet my previous cardiologist didn’t approach my case in this matter until my situation became worse. Then I was referred and forgotten.
I also need a ventricular septal defect, which was also repaired in 1971, repaired again as time has undone the original modifications.
I was in atrial fibrillation as well which was exacerbating my two congenital heart defects and creating many of the new symptoms.
The goal was to perform a series of outpatient procedures working then towards the possibility of open heart surgery.
After the meeting my wife and I had dinner as we awaited my son’s arrival from Las Vegas. We were both very excited that finally we knew what is going on and someone is going to do something about it to help me regain my quality of my life.
We picked my son up at the airport and the following day traveled to South Bend as the UNLV Rebels were playing the Notre Dame Fighting Irish. Having been a lifelong Irish fan I had been to Notre Dame for Saturday Game Days many times in my life. This was my son and my wife’s first pilgrimage to a Mecca of football. We had a glorious weekend. Did a ton of walking. And my symptoms were really bad. In fact, I contemplated driving to the ER on the way home. Yet the symptoms subsided and I proceeded to a restaurant, had dinner, went home and slept well.
On Monday I noticed that I had gained almost 15 pounds since I met with the new doctor on Thursday. Wow. I reached out to my new physician, whom I met only once! He advised me to go to the hospital immediately. I texted my wife and told her I needed her to come home. When she arrived, I explained the situation. I packed quickly, anticipating a potential hospitalization, as my previous cardiologist had indicated that if my weight were to climb rapidly a hospitalization for intravenous lasix might be needed. We traveled the fifty plus miles, I needed to go to a specialty hospital deep in the city of Chicago, and it took nearly two hours because we made the trek during rush hour traffic. While in the car, I was a passenger, there were moments when I thought I might not make it to the hospital. I was afraid I would pass out or that my heart would become so weak I would lose consciousness.
When we made it to the ER, I was greeted by a nurse who did a blood pressure check, checked the electronic health record for information from my physician, and immediately moved me into an EKG room. When they move that quickly in a hospital setting, you know there’s something they’re concerned with.
I was walked to a private ER room where a doctor, an APN, and two nurses descended upon me like a NASCAR pit crew, each with their own tasks, attempting to hook me up to a heart monitor, insert two ivs, put on a blood pressure cuff, and get an O2 sensor on my middle finger. I was trying to bring the doctors up to speed while being poked and prodded and looking at my wife standing in the corner with a sense of shock and awe on her face. I was disoriented. Overwhelmed and scared.
We had been here before. My wife and I. With our seven week old daughter, Dakota, who also had a congenital heart defect, Truncus Arteriosus, and needed to be in the ER due to her declining symptoms prior to her open heart surgery.
This time I’m the patient not the parent. This time my wife is a spouse not a parent and alone. The irony was heavy, the moment thick. So much for the metaverse and medical procedural dramas, this was real, this was reality, this was happening.
Ten minutes of being poked and prodded the medical team had two ivs in and all the machines hooked up. The medical team left the be room. We were alone for the first time. My wife now sitting. Clenching her coat. Trying to get comfortable. Staring curiously at the monitors above my head. My wife told me that not only does my heart monitor say I’m in A-Fib I was also tachycardic. Not being able to see the monitor I asked her to read it to me. Having worked in an ER as a emergency behavioral health therapist I’m familiar with how to read some of these machines. Probably familiar enough just to be dangerous to myself thus creating more stress and anxiety and raising my numbers. My chest was pounding and the pressure was heavy but at least I was sitting. I felt as bloated as a beached whale.
The initial doctor came back in and gathered additional data for the history and inform us of the “plan”.
He departed and then the Chief of the ER came in and asked additional questions, shared additional plan elements and left. Within 3 1/2 hours, a record for me in an ER and also I’ve never heard of anyone getting from an ER to a recovery room in that amount of time, I was wheeled to the 10th floor and dropped off at my new home for what would be the next eight days. I was admitted to the hospital. I had not been in the hospital for many years. I don’t get sick. And my heart health has been great up until the last three months.
My hospital visit sucked. For the most part. Boredom is the greatest threat to me in situations like this.
I spent eight days in an interior room with no windows. That was incredibly mentally taxing on me. I could feel my skin start to crawl from not being able to see the outdoors. If I wanted to see outside or know what was happening, I could walk to a rather simple and at times dirty nook complete with two uncomfortable chairs and a small table. I would sit there when my wife visited. Otherwise this nook was just outside the rooms of others and I felt weird sitting there overhearing their television options or discussion with their teams and visitors.
My room reminded me of the office I worked in when I was an ER Emergency Therapist. That too was windowless. And the ER is pretty much windowless. Yet that was ONLY a 12 hour shift. In this room, I spent hours without being able to glance over and see what was happening outside or peer down to the street to wonder where all of those people were going and why. I struggled. When needed, I got a window fix. I also walked the hallways.
Fortunately, I packed my computer and tablet so I was able to stream shows and movies which helped keep me sane during the long days of just sitting and waiting.
I also did a little bit of work, which surprised much of the medical staff and I’m not quite sure why. What did they expect me to do when I was sequestered in a windowless room for over a week? I was just sitting and waiting. I can do some work. I also talked on the phone with family and friends.
My treatment started day two with IV lasik designed to try to get the water weight off my body. Due to the insufficient pulmonary valve my right ventricle was “full” thus making the right atrium “full” as there is no where for returning blood to god. And if the “atrium” is full then the body holds on to fluids. Its like what happens on the expressways when an accident occurs and four lanes become one. Major backup. So the docs gave the fluid an ‘off ramp’ through my kidneys and pee.
As lasix can damage liver and kidney I was constantly poked for ‘fresh blood’ and given supplements to help my body cope with rapid and unconditional means of removing fluid. Nothing like a two am wake up call of ‘phlebotomy, I am hear to get blood.’
I also had an echocardiogram. The doctors had talked about doing a cardio catheterization, a transesophageal echo, cardiac MRI as well as a cardio version to shock my heart back into normal sinus rhythm. These are the tests and procedures that we were going to try to accomplish outpatient. Cardio version would have the most impact on me at the end of the day as my heart, back in sinus rhythm, beat more regularly and was more efficient at moving blood and reducing fluid buildup. The echoes. MRI and the catheterization were all about gathering data for a potential and pending open heart surgery.
It was a very rough week. Man, it sucked. Boredom, constant poking of needles, peeing into a bottle for measurement, constipation, too many names and faces to remember visiting me, listening to my heart, updating me with confusing and contradictory information and more. And that bathroom. My windowless room had a jack and jill bathroom that I shared with a different patient neighbor every day. I’d get locked out of my bathroom or be using it and someone would walk in. I also didn’t have a private shower yet asked to take one and was given that small luxury in a common area shower and bath on the unit.
It was eight days of lot of sitting around and waiting. And I’m not good at that. In fact, I’m horrible at it.
But I remained optimistic and polite and friendly to all of the medical staff whom I saw and engaged.
I think the hardest part for me was on a Friday afternoon when I was informed that the catheterization, transesophageal echo and cardioversion then maybe an MRI would not be performed until the following week. It meant I had a full weekend of sitting in the hospital in a windowless room with very little visitation because it was almost impossible to host anyone in my room. Needless to say, it sucked.
After the final procedures on day eight, I was discharged late at night. The staff needed to monitor and meet milestones for several hours after my cardioversion. I got to have dinner after not eating all day. For both the cardiac catheterization on Monday and then the transesophageal echo and cardioversion on Tuesday I couldn’t eat after midnight. I didn’t eat either days until five or six o’clock both evenings.
I was glad to be going home.
I was glad to spend my days in rooms with windows.
By the second or third day of coming home I realized just how important that cardioversion was to me. I felt immensely better. No upper chest tightening, no pressure in my sinuses, I was able to have conversations with my clients via telehealth without becoming winded. I could get up and get a cup of coffee without feeling fatigue during the chest pressures building. My blood pressure was phenomenal and I was at the lowest weight I had been in years. I had energy and I was concentrating better.
So as bad as the hospitalization was it led to some really positive outcomes. And post the surgery I hope for those outcomes to just exponentially multiply.
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My Open Heart Surgery