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Valerie Macias - living with AV Node Junctional Tachycardia and Sick Sinus Syndrome

My name is Valerie Macias and I'm 21 years old. I recently had a pacemaker implanted for a tachycardic junctional rhythm (AV Node Junctional Tachycardia) and Sick Sinus Syndrome, which took six years to diagnose (I started having symptoms when I was 14 years old).

During those six years, I lost consciousness about 7 times, with worsening symptoms of shortness of breath, tachycardia (180bpm at rest), chest pain, fatigue, cold extremities and many other symptoms. I’m a very active and sporty person, so this was a major setback in my life.

 

My family and I were desperate for answers; during those years, we must have seen at least 25 physicians, but came up with no diagnosis.

 

Eventually doctors turned towards psychological aspects such as panic attacks, wanting attention, depression, or that I was on drugs, pregnant etc...which were completely untrue.

 

I eventually found an electrophysiologist who performed a cardiac ablation in August 2006 to correct my arrhythmia, but two weeks later, I continued to have the same symptoms.  While I was at home watching television, my heart rate shot up to 200 and I passed out. My mom called the ambulance right away, and when the paramedics came, they knew that I needed help and they knew this was not just something I could “fake”, which is what many doctors had assumed at this point. 

 

They rushed me to the hospital where I was admitted for 3 days.  After the 3rd day, I was released with “I don’t know why this happened. Take these beta-blockers”, but these medicines were not helping at all. 

 

Then, in October 2006 (after 2 more fainting episodes at my University), my electrophysiologist finally said, “I don’t know…take these antidepressants and beta-blockers. Maybe it’s an endocrine problem or you’re just stressed.”

 

So, my mom and I came home crying, BUT that’s when God answered our prayers. 

 

A family friend of ours was at the house, and had just come back from the airport (flying in from a short vacation).

 

He asked “what kind of doctor is it that you see?” And we said, “an electrophysiologist,” to which he replied, “Well, I was sitting next to one on the plane over here.  I told him about you and he said he was interested in checking over your problems, and he gave me his card.  He works at Cedars Sinai Medical Center in Los Angeles”. 

 

At that exact moment, his cell phone rings, and it was my future electrophysiologist!

 

So, our friend handed the phone to my mom and I and from that point on, we knew this was the doctor who would save my life.  He introduced himself and said to go ahead and fax over all my records and he’d check it over.  He called one day later and asked if we could go to Cedars Sinai Medical Center the next morning to see him, because he said that all the EPs found my case interesting and complex, and that a renowned EP was also flying in from Utah that day. So we left the house at 4:30am and headed over to the hospital and we just fell in love with all the doctors involved.

 

For two weeks, they studied my case, and finally, came to the conclusion that I had arrhythmia problems that were caused by a virus that damaged my heart’s electrical “wiring” and also mentioned that the ablation might have made my symptoms worse.  They said in order for me to feel better and to regulate my arrhythmias, I needed to have a pacemaker implanted. So on November 3rd, 2006, I received my first pacemaker. 

 

When I woke up from surgery, I was amazed at how well I felt!  For the first time in many years, my skin was no longer pale, my hands and feet were warm, and I wasn’t short of breath!  Nurses, doctors, friends, and family members were constantly amazed at how well I looked.

 

However, I did encounter a complication: a doctor from a different hospital took my steri-strips off too soon, pulling one tiny suture out, which eventually made an opening in my incision.  Subsequently, I developed a pacemaker infection and was admitted to the Cardiac Intensive Care Unit (December 15, 2006 through December 27, 2006).

 

Cardiologists had to remove the whole system and relocate it to the other side of my chest, and during surgery, my heart stopped. Fortunately the physicians reacted quickly and placed a temporary pacemaker on my neck with wires coming in through my jugular vein to the atrium and ventricle.  But, by the grace of God, I was able to be released from the hospital on December 28, 2006 with a brand new pacemaker, which has given me a better quality of life!  It was a great Christmas present for all of us.

 

I’m now on the road to recovery and I feel wonderful! Recently I’ve been working on my pre-med courses and studying for my MCATs. I plan to pursue a career in Emergency Medicine and musical composition. I enjoy rollerblading, playing softball, piano and violin.

 

If you feel like you’re the only young person with cardiac problems, then this website will definitely help you.  I know that when I was sick, I felt as if no one really understood, but when I found this site, it was very comforting to know that there are many young people out there that are going through (or have gone through) the same emotional and physical stress as I was.

 

As a future medical professional, I pray I will never lose sight as to what patients are going through, as well as their families.  My goal is to not stereotype patients when it comes to illnesses, because as shown here, you don’t have to be old to have heart problems; it could happen to anyone.

 

 

Valerie Macias


 

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