Andrew G's Story

Updated: May 18, 2020

For a few weeks, I noticed that my heart rate was elevated while relaxing, watching TV and preparing to go to sleep. This is not something I had been feeling for a long period of time nor knew how long it may have been going on for. Maybe that was because I had always been active growing up, never had any signs of health concerns during regular doctor’s visits or a combination of the two. Being stressed or anxious can cause these types of symptoms, but what more than school work during my sophomore year in college could have been causing this?

After a few more weeks with these symptoms, I told my parents what I had been feeling, and with heart disease a part of our family history, we decided to go to the ER. A sleepless night included a few hours spent in the ER and multiple tests conducted. Eventually, I got the OK that the results looked fine and was cleared to go home. Phew, what a relief. To be safe, we scheduled a follow up with my dad’s cardiologist the next day to get a second opinion. Shortly after getting acclimated, a stethoscope was placed on my chest to listen to my heart, and without missing a beat, the cardiologist was able to conclude that there was a leak in one of the valves. Later, an echocardiogram confirmed that I had a bicuspid aortic valve, a condition that is congenital. A bicuspid valve causes the valve to narrow, preventing it to fully open, reducing blood from the heart to the body, and in some cases, causing blood to leak back into the heart. This is a condition where the valve slowly deteriorates over time and cannot be fixed without surgery. Follow-ups included yearly appointments with my doctor to monitor symptoms and to conduct echocardiograms to see how the valve was functioning.

A little over a year later, during my junior year of college, I was back for my annual checkup. I had been feeling great, knowing that this condition was being monitored. After a 30-minute echo, I was on my way home to enjoy the rest of the day. There were no dietary or physical restrictions, other than no heavy lifting, and life went on with no interruption. Later that evening, my mom got home from a long day of work and brought dinner. As I excitedly began eating, she was a bit more hesitant and opted for her iPad. This didn’t seem odd to me, as she had recently got it and was excited to use it. As time went on, and the food was getting cold, I noticed she had not eaten. So I asked, “What are you looking at on your iPad?” She put it down and asked if I knew what would be needed if my valve condition had worsened. Of course this was spoken about, my cardiologist said I would need surgery to replace the valve. This was out of sight, out of mind for me as I thought it’d at least be a few years before that was necessary.

It wasn’t until after this conversation that I found out that my doctor had called with the results from my test earlier that day. My valve had materially deteriorated over the previous year and had caused the heart to enlarge. The ejection fraction, the percentage of blood that is pumped out of the ventricles, had dropped into the 40s, whereas normal is considered anywhere between ~55%-65%. It was recommended to have the valve replaced sooner, rather than later. I was at a loss for words, and appetite, as this news was shocking. Never in my wildest imagination could the circumstances change so drastically in a year. After speaking with my parents, I decided that I wanted to get this done as soon as possible, which meant two months later, after the semester ended. Three weeks after my junior year of college, I was going to have open-heart surgery at 20 years.

Over the next month and a half, preparation both mentally and physically for surgery began. Many pre-op appointments, including choosing where and with which surgeon I’d do the operation with, and what type of valve would be used. All options that I discussed with my parents, but ultimately the decision had to be made by me. What did I know about the difference between a tissue valve and a mechanical valve? It’s safe to say this was one of the most difficult things I’d have gone through and will go through in my life. Mentally, there were a lot of positive thoughts, because I knew that once the operation was complete, my valve and heart would be stronger. Leading up to surgery, I remained calm and optimistic, but also didn’t want to talk about it with anyone, even when asked by a family member or close friend.

On the day of surgery, when the time finally came to head to the operating room, I hugged each of my family members who came to the hospital that day, and although they wanted it, I didn’t allow for a second round of hugs or inspiring words. There was no need for more delays, and I was ready to get this over with.

At 20 years old, and going in to surgery for the first time, I walked myself into a cold operating room and got myself on an uncomfortable operating table. From there, the rest was up to the medical professionals. At 6:30AM the next morning, after a three-hour operation, and another 10 or so hours under anesthesia throughout the night, I woke up surrounded by nurses and doctors assisting me with waking up. I can recall the breathing tubes and certain IVs being removed, but the next day and a half in the ICU is a blur. After my time in ICU, I was transferred to step-down, where they had me up and walking two days after open-heart surgery. Modern medicine is an incredible thing. The next three and half days were spent in step down, with no appetite and the inability to sleep at night, hopelessly wondering when life would feel normal again. All I wanted to do was go home, which I finally did six days after surgery.

The next six weeks I spent sleeping upright, in a recliner, because my broken sternum had to heal and lying flat was not an option. I was scared to sneeze, cough or laugh because of how physically painful it was. Recovery involved going on three walks per day, accompanied by my mom, dad, sister or friends. Through all of this, I was feeling great and on the road to a successful recover. This was quite the experience. Three weeks after surgery, I had the typical follow up with the surgeon. This is where they remove the bandages on my chest and check-in on how I was feeling. For the first time, I was going to see the damage for going through this, an eight-inch scar down the middle of my chest.

From that day on, that scar will continue to remind me of how precious life is. I’m not certain what could have happened if I was not in tune with how I was feeling those few weeks in March of 2015, but am grateful that the condition was caught early. Every day when I look in the mirror, I'm reminded what I went through and to not take anything for granted, especially your health. Aside from the physical aspect of all this, I’ve learned that there is a large mental component that can stick with a heart patient. If there is any uncomfortable physical feeling in my body, I immediately think that it is related to my heart. Is there something wrong with the valve? Why is my heart racing? Is there an issue non-valve related? It’s as though each heart beat is amplified. The list goes on and the thoughts never stop, no matter how good all my test results are.

In the three and a half years’ post-surgery, every echocardiogram, stress test, blood work and other tests I’ve had, my results are always excellent. But mentally, I can’t match these results with how my body feels during certain times. Has my lifestyle changed all that much because of surgery? Yes. And it’s not because I have been given many restrictions or am doing anything significantly different than before surgery. It’s because before I do anything, I stop to think if it will have any negative affect on my heart. In most, if not all, cases, the answer is no. It’s difficult for people to relate to these physical and mental obstacles, but it’s similar to any other injury.

I’ve been fortunate to join the American Heart Association’s Young Professionals group in New York. This has been one of the most eye-opening experiences. I’m surrounded by a group of incredible individuals, similar in age, that either have a heart condition, had open-heart surgery, has someone close to them that deals with a heart condition or that wants to help in raising awareness for and fighting against heart disease. Joining the AHA has brought me peace of mind knowing that there are other people, living with a heart condition, that go on to have extraordinary lives.

Going through an experience like this has given me a new outlook on life. I appreciate each day more consciously than I did in the past. I’m grateful for everything life has to offer; family, friends, happiness, health, experiences, work and much more. I’ve heard the phrase “heart patients live in fear.” And in some ways, this may be true, because things can change fast. Everyone deals with fear at some point in their life. But being a heart-patient, or dealing with any other difficulty that comes along, doesn’t define life. For me, there’s no other choice than to be optimistic. Life isn’t easy, but it is good.

Special thank you to my family and friends for always being supportive. It’s because of you all that life is enjoyable. To my team of health care professionals: my cardiologist, the surgeon and his team at the hospital, and any additional doctors that I visited with throughout this – thank you for the extraordinary efforts you show on a daily basis to care for the innumerable number of patients that you do.

#CongenitalHeartDefect #BicuspidAorticStenosis #Survivor #YoungAdult #Grateful #OpenHeartSurgery

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