This Heart I Love With
It was a perfect late August day. Sunny and hot with a hint of Fall in the evening air. The bedroom windows were open and a gentle breeze lifted the sheer fabric of the curtains. Tossing and turning, I just couldn't get comfortable enough to fall asleep and decided that a fan in the window would be what I needed. It would bring in a touch of fresh, night air and allow me to relax enough to sleep. It did the trick as the next thing I knew I awoke reaching for blankets because the room was so chilly. The blanket wasn't enough to get warm so I rolled out of bed and shut the fan off. I could feel the change in my body immediately. My heart rate was up. I should say that this is not unusual. Anytime my body gets a chill it can affect my heart rate. The rhythm becomes rapid and can get stuck in that pattern.
My heart story actually began when I was 14 years old and had what was termed a "fluke" medical occurrence. I had been sitting watching tv with my family and when I stood my heart was beating so fast you could see it pulsating in my chest. It didn't hurt; just felt like it was shaking. It was strange to watch my heart beat through my chest in such a way. I don't remember being frightened; just thinking it was strange. My Dad made me sit and put my head between my legs and the racing eventually subsided. My parents booked a doctor's appointment for me and after several tests, the doctor decided it was probably a fluke thing associated with growth.
Fast forward another ten years to age 24 and I am now six months pregnant with my first child. Since being pregnant, my heart had begun to do many unusual things. It would race, skip beats, and sometimes just flutter. Often times during an episode I would feel faint and always had an underlying nauseous feeling. My ob/gyn felt it best that I see a cardiologist. It was with this cardiologist that it was discovered that I had a condition called Wolff-Parkinson-White syndrome (WPW). WPW is commonly diagnosed through an ECG. The ECG reading will often times show a delta wave pattern that indicates WPW. This was the case with my ECG. I was told that it was non-life threatening and was showed ways to interrupt an episode using pressure points (vagal maneuvers). One technique I used quite frequently was to press on my eyes with the palms of my hands. Another was to take one hand and put a lot of pressure at the base of the other hand (where you would check your pulse). The final technique I sometimes used was to squat and cough. I was told to eliminate caffeine from my diet and be cautious of all medications that could increase your heart rate.
To better understand what WPW is I will tell you that in a typical person the heart beats between 60-80 beats per minute. With WPW it is not unusual to experience rapid heart rhythm (tachycardia) of up to 150 beats per minute. In a normal heart, electrical signals use only one pathway when they move through the heart. As the electrical signal moves from the heart's upper chambers to the lower chambers it causes the heart to beat. For the heart to beat properly, the timing of the electrical signal is important. With WPW there is an extra conduction pathway. This means that electrical activity can now travel through the accessory pathway as well as the regular pathway. Some of the symptoms associated with the rapid heart rhythm of WPW include dizziness, chest palpitations, fainting, or rarely sudden death.
Reassured that my condition was non-life threatening, I learned to deal with the frequent episodes and, in most instances, felt that with the vagal maneuvers I was able to have some control over them. People witnessing the episodes were often times more fearful than I. Over time, the episodes increased. I should also note that I gave birth to two more children for a total of three births in a four year time frame.
As the episodes increased and sometimes became more difficult to slow or control, I would return to various cardiologists throughout the years that would always reassure me that it was nothing to worry about.
A significant difference in my experience with WPW was that I had a very difficult time in cold temperatures. My body could not shake a chill and would send my heart into extremely fast paces and cause the rest of my body to react as well. Others joke about knees knocking, but mine actually did! I could also associate hormonal episodes with increased heart rhythm. For years I experienced a constant underlying nauseous feeling. I often thought doctors didn't take my condition seriously as my coloring was great and I presented as a picture of perfect health.
Returning to that August night; however, everything changed. My heart was racing at a rhythm that I had never experienced before. Trying to be brave, I immediately tried all of the vagal maneuvers that I had used through the years and none created the break in rhythm I needed. I was scared, but knew if I panicked I could make it worse. I checked my pulse and realized that it was so fast that I couldn't even count it. I decided it was time to wake my husband and let him know what was happening in case I fainted. When he felt my pulse, he immediately dialed 911 and got the rescue to our house. Believe it or not I was still relatively calm; still trying my vagal maneuvers. I had lived with this condition for several years and was more upset that I couldn't bring it under control.
The EMTs that arrived took my vitals and just looked at each other. They couldn't believe how fast my heart was beating. They immediately called ahead to the hospital. My husband had to stay behind with the kids. I left with confidence that by the time he got my parents to watch the kids and made it to the hospital that I would be all set to go home. I told the EMTs that I had WPW and explained what it was. They were amazed that I could hold a conversation with them while my heart was beating as it was. Upon arrival to the hospital, they rushed me in and immediately took my vitals, hooked me up to an ECG and called for a cardiologist. It was then they told me that my heart was beating steady at 276 beats a minute. From there it was a whirlwind. Everyone on duty that night wanted to come in and see for themselves what was happening. The cardiologist on call examined me and then told me that he was not sure of what to do. He was waiting for a call back from a cardiologist in a larger hospital. That cardiologist instructed him to administer a low dose shock to my heart delivered through patches on my chest. They did and nothing changed. The decision was made to transfer me to the other hospital.
Now at this hospital, I was once again hooked up to another ECG and more tests were ordered. My Dad and husband had also arrived. We were told that it appeared that I not only had WPW, but also a problem in the main chamber of my heart that was problematic in combination with the WPW. They too were transferring to a Boston hospital that would be better equipped to help me. A cardiologist was waiting for me when I arrived in Boston. He ordered his own series of tests and confirmed what the other cardiologist had suspected. I not only had WPW, but also an abnormality in the main chamber of my heart. He said he was surprised that I had lived as long as I had with it. Similar cases he was aware of all resulted in sudden death.
Needless to say, I was speechless. For years I had been told that my heart condition was non-life threatening. I decided it best to wait for my Dad and husband to arrive to hear what the course of action would be. I thought three sets of ears would be better than my one set in getting the facts straight.
When family arrived, the doctor told me that he believed he could save my life with a new heart procedure. He was a visiting cardiologist from Ireland who was in Boston teaching this technique. He felt confident that it would work for me. I listened in shock. Apparently this procedure required that I be awake so that I could communicate with the team of doctors when they needed me to. He reassured me that they would medicate me, but that I needed to be awake until my heartbeat had hit the range in which it could be repaired. He had performed one other similar surgery in Boston successfully and I would be the second person to have this done! He told me he and a team of specialists would perform the surgery.
What do you do when given this type of news?? How do you react?? I often wondered how this would feel.
I didn't cry. I didn't even ask many questions. I simply said, "I need to go home and make sure things are in order for my children in case I don't make it through". Words no mother wants to speak.
The doctor did not agree with my decision. He wanted me to stay and have the surgery done. He said if I waited I could die doing something as simple as grocery shopping. I didn't care. I needed to see my children and make sure that everything was in order. I left the hospital that day with a surgery date scheduled for one week later.
My Dad cried the entire ride home while I just sat in silence. My Mom was at the house waiting for us and I just fell into her arms and cried for hours. I needed her.
At home, I tried to remain calm and focused on what I had to do. I organized everything. Made sure my husband knew where everything was including the one thing I had never imagined using, the life insurance. It's incredible how sharp and in focus your life becomes. I pleaded with God to let me stay and see them grow. I then sat and wrote them each a letter in case I was not there to see those moments. It's always been important to me to hug my children and tell them I love them, but as you can imagine it was all I lived for in that week.
Surgery day arrived and my Dad was there to pick us up and drive me into Boston. My Mom would stay home with the kids. Once again, I spoke not a word on the drive in to the city. I checked in, got my hugs, and pleaded with God one last time.
The surgery was bizarre. I have a vague recollection. I remember watching parts of it on tv, I remember some moments of intense pain and then I remember waking to someone saying my name. I had made it! A doctor was there with my family explaining the surgery. Apparently I had numerous pathways that had to be removed and an area in the main chamber of my heart could not be repaired at this time. He said that "someone" was watching over me as one of the pathways was so close to the one required that they weren't sure they could remove it. They were able to remove it and maintain my proper rhythm without the aid of a pacemaker. Overall, they accomplished what they set out to do and considered the surgery a success.
Recovery was steady, but not without aftereffects. This type of event changes your life. I was super in tune with my body. I questioned every beat, every odd sensation. I was afraid to fall asleep for long. When awake, I felt more in control and could feel the beat of my heart. Proof I was alive.
That was ten years ago and I am better than ever. Still very aware of my heart and it's unusual make-up. Miracles do exist! I've been fortunate to both witness and experience miracles in my life. Everything happened exactly as it should that August night.
This heart I love with may be wired differently, but it's the heart I have been given and the one I am thankful for. I guess it is true that I walk to the beat of a different drum!