My name is Alfredo Hernandez, and I am currently 45 years old. At the age of 39 I began a very long and difficult journey with heart problems. Here is my story.
I had been a very active athlete, all of my life. I won many gold and silver medals in state sports competitions during middle school and high school. In college, I ran marathons, and rode long distance road bike tours throughout New Mexico, just for fun. Everything seemed great with my body and my heart, until April of 2009, when I was training for a half marathon. I began feeling dizzy and having black outs after every run. I saw my primary care physician, who told me that I needed to see a cardiologist, because I had an abnormal EKG, which concerned him. Before this, I only went to my primary care physician for an annual physical or the occasional sniffle. It concerned me quite a bit to be told at the age of 39 that I had something wrong with my heart. I was aware that many of my aunts and uncles had suffered from heart problems, many had pacemakers, some had suffered strokes and even some had died prematurely from unknown heart problems. My own mother had a pacemaker. She suffered a stroke 13 years prior that had left her disabled for nine years until her untimely death at age 64 from sudden heart failure. But no one ever really knew what was causing these heart problems in our family.
The cardiologist that I saw at that time, told me I was having many cardiac arrhythmias in the top right chamber of my heart, so I needed a procedure called an ablation to kill the nerves that were causing the arrhythmias, and that this should resolve my issues. Ten months later, I was driving to work and suddenly began to feel extremely dizzy and very scared because I was fighting not to lose consciousness on the road. By some miracle, I made it to the emergency room, with a heart rate of less than 20 BPM. I was told that I was going into heart failure, and that I needed a pacemaker immediately. The following morning, I was the proud owner of a standard two lead pacemaker, intended to keep my heart beating, because apparently my heart could no longer beat on its own. Once again, I was told that this should resolve my issues, and that many people live long, active lives with a pacemaker. While this may be true on many occasions, for me, this is where my journey really begins to get interesting and difficult.
About one year later, for no apparent reason, my heart, at rest, began to beat at 140 to 170 BPM for hours at a time, and then for days. Needless to say, my heart began to get very sick, weak and slightly enlarged. I felt horrible. So, I returned to the same cardiologist that did my ablation and my pacemaker. To my amazement, he could offer me no real explanation, and that I would probably need to be on very large doses of beta-blockers. This medication robbed me of much vitality and quality of life, but was intended to keep my heart calm. So I decided to search for a different electrophysiologist, one that may have more expertize with these types of problems.
Despite taking the beta-blockers, by the next month, the arrhythmias continued to worsen, and I was taken to the emergency room at a different hospital. My heart had become very enlarged, my heart function was half of what it was supposed to be for a person my age, and my body was swollen with fluid that my heart could no longer eliminate on its own. I didn’t feel good at all. When I asked the ER physicians if they knew of a clinical cardiac electrophysiologist that might be able to help me figure this out, they instantly knew who I needed to see. This is when I first met my new wonderful doctor, Dr. Michelle Khoo.
I still remember that day she came to my bed side, when I was so tired and weak. I told her that I had been doing some research on this heart problem that runs in my family, and I think it might be an SCN5A genetic mutation. She smiled at me with delight. “I want to get better”, I told her. She responded to me with a touch, a smile, a face full of confidence, and said, “Don’t worry Alfredo, we are going to figure this out together and I am going to take good care of you”. Wow, these were the words I needed to hear. I felt at that moment that I could confidently put myself in her care, and I could now just focus on keeping myself strong.
She ordered tests, a heart catheterization, an EP study, and a cardioversion to slow down my heart. She came in with my results and a treatment plan. She said that due to my enlarged and sick ventricles, I needed a different kind of pacemaker (a BI-V Pacer) that controls both sides of my heart. I also needed another ablation, and different types of medications. She ordered the genetic testing, and we awaited the results, which would hopefully give us more answers, and potentially a new treatment plan, which would hopefully continue to optimize my quality of life.
Over the course of the next three months, I was back at the park, fast walking my miles. I felt much better, and luckily, my heart had not sustained any permanent muscle damage. My heart function began to improve, and slowly returned back to a more normal size. Dr. Khoo and I kept in very close contact, and I felt like I had my very own doctor who really cared for my wellbeing. This is because she did.
My genetic test results came in. I had a mutation called an LMNA gene mutation. This information did give us a new direction. I was at risk for sudden cardiac death. This is where my heart could suddenly, without warning begin to beat so fast that it would just vibrate and not move any blood (ventricular fibrillation). Because of this, I needed a new pacemaker with a defibrillator (an ICD) to protect me from sudden death. After I felt stronger and was ready to tackle another procedure I went in for my new and third pacemaker, with an ICD.
It was a very good thing that we did genetic testing, and that I had an ICD. Just a few months later, after feeling very good for quite some time, I was awakened at 2:45 am, because I began to feel ill and extremely disoriented. I suddenly lost consciousness for almost 30 seconds. I went into ventricular fibrillation, an event that can lead to sudden death, unless someone is there and ready to perform CPR, or you just so happen to have a built in defibrillator. My defibrillator discharged, and my body suddenly jumped. I woke up to see my horrified wife leaning over me trying to wake me. I was suddenly alert, and I asked my wife “Honey why are you pulling on my leg”. I was there, I was awake, I was alive, and my ICD saved my life at age 43.
Over the course of the next few months I sustained several additional shocks from my defibrillator, Once, I was shocked in the middle of a racquetball game at the gym. Yes, I had resumed my life as best as I could. I even returned to work. My defibrillator was my best friend, but something I also feared very much. It hurt to be shocked by my defibrillator, and sometimes I felt lots of anxiety if I began to feel dizzy, wondering if I was going to be shocked again.
My condition is genetic and there was no cure. I still had to go through a few more surgeries and procedures to maintain my quality of life and ultimately as of August 2013 I was placed on the heart transplant list.
Why am I writing this story and testimonial on behalf of my doctor, Dr. Khoo? It is my belief and my right to say that I am here today and have maintained a pretty great quality of life, under the circumstances, because of her. Her knowledge, her intelligence, her confidence, but most of all, the amazing way that she demonstrates her love for what she does through the care that she provides for her patients, me included. It gave me so much confidence in knowing that I was always in good hands. She always made sure that I received the best possible care and I knew I could always place my trust in her. Over the course of my journey I developed a great professional relationship with her. Being that my condition was hereditary, she helped and guided me to bring awareness, education, and genetic testing to my very large extended family throughout the country. To date many of my relatives have now been tested, and for those that have tested positive for the LMNA mutation, their physicians are now aware of their risks. Ultimately, the way my family members are now cared for has changed. This has reduced unnecessary complications, has protected my family members from strokes, but ultimately from unnecessary untimely deaths as we have seen in the past with our family.
As of March 31, 2015, not only am I a survivor but also the recipient of a very healthy heart transplant. I am doing great and I am told that eventually I will be able to ride my bike and run again. I may not win many marathons now, but that’s ok because I have already won the most challenging race of my life. And I am very happy.
Thank you Dr. Khoo. I am blessed to have had you as my physician and yes, in my opinion my guardian angel.