What I learned from my six heart surgeries in 19 years

When I was 11 days old, I had my first heart surgery – the first of six I’ve now had. I’m 19 years old.

I was born with a heart condition called Aortic Valve Stenosis, meaning my bicuspid valve couldn’t properly pump blood to my legs. What does that mean for those who don’t specialize in medical jargon? It means that heavy exercise was not an option for me because of the lack of blood circulation to my legs – for example, if I ran for too long, my legs would be completely dead and I’d quickly become out of breath. In short, to say becoming an athlete was not in my future was an understatement.

At twenty eight days I had my second heart operation. I was rushed to UCSF Children’s hospital in San Francisco when my cardiologist had told my parents that I needed open heart surgery. The surgery was successful and I was allowed to go home after what I am sure was many sleepless nights for my family watching over me. However, the doctors warned my parents that the heart valve that I was born with would be unlikely to last more than a couple of years, and the chances were I’d need another open heart surgery to replace it around my second birthday.

But I was lucky. Two years turned eighteen, and even though it was not what one would call a ‘straight line’ I think it turned out pretty well. I’ve had surgeries throughout my lifetime: number three when I was 7, number four when I was 9, number five when I was 17 and number six when I was 18. Surgeries one, three, four, and five were catheters, which is an operation that works to enlarge the valve to keep the blood flowing, in my case, to my legs without replacing the valve. I kept on the catheter pattern through December 2013 when I was seventeen. However, the sixth one came as a surprise when I was 18 and I was told it was time to replace aortic valve.

Trying to fit in

I was born in Pleasanton, California a small town 45 miles east of San Francisco – a town where most of the kids are sporty. ‘Fitting in’ was hard – I wasn’t medically cleared to join my friends playing on local soccer teams, and I had a major fear of being different than everyone else around me.

 

I distinctly remember my mom and I sitting at Starbucks when I told her I was afraid to look other kids in the eye or ask to play with them at recess. It took me a while to come to terms with it, but I was scared they wouldn’t accept me because of my medical history. It was then that my mom said something that would stick with me for the rest of my life.

“Looking at you no one can tell that you have a heart condition. You don’t have a sign on your chest and no one has to know if you don’t want them to.”

Despite my insecurities, I channeled my energy in different ways. I decided to write a book after my second catheter for kids who were struggling with heart problems. I described the process of the surgery day, from check in, to what happens overnight in the hospital, to suggestions of what to do at home to ensure a full recovery. We even gave it to my cardiologist, in which I later found out he distributed it to families whose children were about to have the same procedure. If I could make it through with a smile they could, too.

My parents decided that if I couldn’t do sports, we would travel the world instead. Between the ages of 5 and now, I have lived in Washington D.C. and London in addition to summer trips to Italy, France, Switzerland, Scotland, Wales, Germany, and Austria.

As I continued through the coming years I was due for yet another catheter when I was in third grade, meaning I missed a few weeks of school.  The years following my fourth surgery were great, too: I was successful in middle school where I dabbled in French classes, and got involved with Leadership.

Of course, I still had to look out for my health which included sitting out of the weekly P.E. mile runs and reduced activity during team games. There was some confusion here and there about my not looking like the typically weak and lifeless ‘cardiac kid’, but I was excused from the P.E. requirement throughout the entirety of my high school career.

By the end of my freshman and sophomore years of high school, I was convinced that I was in the best spot I possibly could be: good grades, great friends, working towards my top colleges, and best of all, my medical woes were still kept a secret.

That was until junior year, better known in my mind as ‘the year from hell’.

A fairytale gone sideways

The summer of 2013 was great in many respects, but I was going into hospital for an increased amount of medical appointments and tests. I kept being pulled back to the children’s hospital for stress tests (running on a treadmill), as well as echocardiograms and EKG’s. I knew the tests were important, but I wasn’t prepared for them to flood into my junior year. I had built myself a tough schedule trying out two Advanced Placement classes, as well as joining on as the Sports Editor of the student newspaper with hopes of gaining admission to University of North Carolina (UNC) at Chapel Hill or UC Berkeley.

But my plan included an unknown detour.

The months progressed until I was missing days of school at a time, one of which I spent 90 minutes in a narrow tube as part of an MRI. The results yielded that yet another catheter was needed: I was basically given three weeks to plan my school schedule and to mentally prepare for another operation.

While I was tempted to dwell in self-pity, I decided to stay positive.  In a funny coincidence, my driving test had been scheduled the day before my operation. It turned out that I was more nervous about my test than heart surgery; I was so excited when I passed, despite knowing I would be hospitalized and unable to take advantage of my shiny new license for at least the next month.

When I walked into the hospital ahead of my catheter surgery, one of the nurses commented: “You seem really relaxed for what you’re taking on today,” they said. I just smiled and nodded my head back at them.

“I passed my driving test yesterday, and that was a whole lot scarier than this.”

The catheter went well and I went home and recovered.

With surgery number five in the books, I returned to school and turned in the work I had missed while I was out. My friends and teachers welcomed me back with open arms and I felt like things were going to fall back into place, even though I knew this wasn’t the end of my surgical journey.

The reality I was living in came to a crashing halt in the following months; just when I thought things were back in place my grandpa became ill and passed away. I was devastated, and for the first time since the conversation with my mom inside Starbucks, I felt vulnerable. I wasn’t sure what was going to happen next, but my family and I stuck together like no other. We helped each other get through this rough patch, just las we did when I was recovering from an operation.

In the midst of the pain following my grandpa’s death, I forgot I’d applied to a week-long sports journalism at UNC Chapel Hill for the summer – I opened my email to find I’d been accepted. I would finally be able to enjoy my last summer before graduation.

As the summer wore on I continued to have fun, but suddenly I was called to come back to the cardiologist for a  post-catheter check up.

I went in expecting as an all clear, but what followed was my biggest nightmare: I was due for a valve replacement – open heart surgery – and I needed it in the next few months.

And so my senior year began.

Everything was in full swing and I became knee-deep in the college application process. By this point my surgery was scheduled for December 4, so I had a few months to enjoy high school life before taking a (hopefully unnoticed) absence.

As well as spending time with my friends I continued to apply to college as well as writing countless essays trying to explaining my current situation. As December drew closer, I began to prepare for the month of surgery and recovery ahead. But my body had other plans.

The first few days in December I started to feel under the weather, but I passed it off as nerves about the surgery,  The day before my open heart surgery, I proceeded into the pre-operation tests of which included radiology, an echo, EKG, and blood tests… then the results were in. I was sick.

My throat was inflamed, I had a temperature and my blood cell count was through the roof – I was sent home and told to rest up, illness was coming and there was no way I could have heart surgery with potential pneumonia on it’s way. I couldn’t believe what I was hearing.  After all that mental build up I had to wait.

And thank goodness I did. The next morning I woke up with Bronchitis and was sick for two weeks. Even though I was disappointed about postponing my surgery, I couldn’t imagine what it would’ve been like if I had been coughing at that rate after having my chest literally cracked open. Not only did postponing it allow me full time to recover from the illness, it also meant that there was an opening for one more college visit; my dad suggested that we visit Oregon.

It didn’t take long for me to embrace the duck culture, and I could see myself there if the opportunity presented itself. I applied right away, and on clicking the submit button the only thing I had left to do was hope the cards would fall in my favor.

By the time all that passed it was approaching the beginning of February, meaning I had two weeks until my rescheduled date. I was determined to stay healthy this time, and even though I would be missing two months of school I was more than ready to get this over with. I went back for the same set of tests, and the only thing that was different this time was the okay to come back the next day.

I chose to view operation day like a rivalry game; I was fully concentrated, and was going annihilate the opposing team (in this case, the surgery), at the end of the it.  We checked in and went downstairs,  then waited to be called back so they could check my vitals and get my IV going.

Once the surgical team got me hooked up to the anesthesia machine, I was praying I would drift off to asleep. This was an anxious moment for me: during my last catheter, they overdid it on the anesthesia and when they put me to sleep I literally thought I was dying. Thankfully this one was gradual, and before I knew it I was asleep.

Four and a half hours later I was out of surgery and laying in the ICU with a breathing tube in my neck with my dad by my side. It was then that it hit me that I had done it, I had conquered the surgery.

“How are you feeling?” my dad asked.

I quickly responded: “You know, that wasn’t as bad as I thought.”

From there, my recovery continued at a surprisingly fast rate.  I was booted out of the ICU faster than anyone could’ve anticipated. The day after my surgery, even the nurses noticed.

“Hey, what are you doing here?” one nurse asked.

“I had my heart valve replaced 15 hours ago,” I replied.

“No, what are you doing in my ICU? Your color is terrific, we don’t need you down here.” I just laughed and told him they were waiting to move me until there was space upstairs.

One thing that made me smile at the time was the fact it was Valentines Day while I was in the hospital; my heart was on the mend on a day dedicated to feeling the love.

Between visits from Grandma, Susie, Steve, and Uncle Clif, I was entertained while focusing on getting out of the hospital as quick as possible. I was told that the normal duration of stay was 7-10 days, and the fastest they had seen someone discharged was five days but that hadn’t happened recently.

The spirits were working in my favor, as I was to have my final echo the next morning. The deal was that if the echo showed that the valve looked healthy, I could go home. After much anticipation, the results came back and I was free to leave! I couldn’t believe what I was hearing, I was discharged three days after surgery.

From then on February 15 has always held a special place in my heart.

Once I was home, it was time for the recovery process to begin. I was out of school for two months to allow myself time to heal and for my immune system to become less-compromised around others. My friends came over to visit often, and after about three weeks had passed, I could go out and do more things. I also paced to and from the mailbox waiting for responses from my college applications.

The month of March stunk. I was growing tired of waiting to see what my future would hold for the coming years. It was then I realized that waiting for college decisions was more stressful than recovering from surgery – something I didn’t think was possible.

It was at this moment that I needed a distraction, and my friends were a huge part in easing that burden. They knew I was stressing, and I was lucky enough to have them in my corner.

As the college decisions started coming back I became even more nervous and walks to the mailbox became more dreaded each day. Getting rejections from my top schools within two days of each other blew, but I knew I had to keep moving forward.

After all, I was in the midst of recovering from major heart surgery this should just be considered a bump in the road.

It was April before I returned to school with a doctor’s note saying I was clear to resume school activities.

I was recovering well, with the exception of the horrendously common situation in which I had to sneeze. I still took it slow when moving around, and I found that if I moved too fast my chest would hurt. There was a day that my chest hurt so bad that I had to come home from school mid-day; it hurt to breathe.

As far as college went, I was frantically trying to figure out my next steps. I had no idea what was going to happen but I promised myself I would make the most of wherever I went. Then Oregon came calling. I was overjoyed when the acceptance letter came in the mail, stating that I was in as a Pre-Journalism major. I accepted without hesitation and was ready to begin my life as a duck.

The happy ending: Quack!

Fast forward five months and I was moved into my college dorm. It felt weird moving to a new state but it has opened up endless possibilities.

As for my story, I have become increasingly comfortable telling it around my peers. It also happens to make a wonderful ice breaker, too. When a group of us were studying for a final winter term the subject had somehow been changed to drinking. The four other people were talking about how they planned to grab a beer with their friends following the session and looked at me when I hadn’t said anything. However, I chimed in when they asked me why I had never had a drink.

“Well when you’ve had six heart surgeries doctors discourage underage drinking,” I said. And so the conversation ended with silent nods of understanding.

Despite the winding road I’ve endured, I’m grateful for the journey that I traveled to get to where I am now. I’m happy, and I’ve learned that my life expectancy is only going to go up as my quality of life soars too.