A nursing student born with a congenital heart disease, Tamar Gevorkian has been a fighter her entire life. After a life-threatening issue with her heart five years ago, Tamar thought her worries were over. Little did she know, it was going to get a lot worse before it got better. In the middle of a pandemic, she was fighting for her life again, this time with double organ failure. Here is Tamar’s story.
I was born in the ’90s with congenital heart disease. During that time there was very little awareness about heart disease in infants. Many babies did not make it past a few months. Some parents didn’t even know their children had it until it was too late. I was one of the lucky ones and this knowledge has engrained gratitude in every day of my life.
Just six months after my birth, I was diagnosed with Shones Complex. This condition affects the left side of the heart causing the valves to be narrow and not pump efficiently. The cause for Shones Complex is unknown.
My parents were distraught when they found out about my diagnosis. No one ever expects their child to have a health issue, especially a very serious heart condition. It was a shock but they pulled together to help me get through my health challenges including my first open heart surgery when I was 16 months old. During this surgery, I had my mitral and aortic valves replaced with mechanical valves. The surgical team also placed a pacemaker during the procedure. The surgery was successful and my parents’ could breathe again knowing this hurdle had been overcome.
Despite the complexities of my health, my parents ensured that I had a perfectly normal childhood. I went to school and had friends. Dance classes and swim lessons. Countless sleepovers and trips go Disneyland just like all of my friends. I NEVER felt any different and this was because of my parents and how they taught me to see myself.
Of course, they were careful and worried but they had to allow me to be a kid and have the same experiences as everyone else. I never felt any less and I was always so happy. My positive childhood experience now leads me to tell all heart parents I meet to take care of their kids but remember to allow them to be kids and have fun. Their view of themselves and how they carry on for the rest of their lives will depend on your actions.
Throughout the years, I had several replacement surgeries because, after all, my valves are mechanical and they wear out. Luckily, however, medical technology has advanced and now they require replacement less frequently. My surgeries had always gone well, and I got back to myself soon after recovery.
Unfortunately in 2014, I developed an unexpected blood clot in one of my valves. With my life in imminent danger, they immediately admitted me to the hospital and soon took me back for emergency surgery. The four weeks I spent in the hospital was extremely traumatic. Death felt like it was around every corner leading to depression and an overall loss of hope. I was able to pull through only through the support of my amazing family and friends.
Ultimately, I got my new valves and recovered well. I felt stronger than before. I thought the hard part was over and I was going to be good moving forward. What I didn’t know was that it was going to get worse before it got better.
In 2019 I began studying in an accelerated nursing program. My life experiences with my heart inspired this career choice to help others. In the middle of my nursing program and the start of the pandemic in 2020, I started feeling sick. Initially, I thought it could be COVID-19 but that was ruled out. I knew something was wrong but didn’t know what it could be.
After experiencing feeling short of breath and my legs swelling I called my doctor. Hearing my symptoms, he told me to drop everything and go to the emergency room immediately. In February 2020 I arrived at the hospital, where I was admitted right away and diagnosed with double organ failure. My heart valve now had a leakage, and my kidneys were failing. I needed care as soon as possible.
To save my life I was put on temporary dialysis, given multiple IV medications, and intubated for over a week. The only way for me to survive was to have another heart surgery to replace my valves. Unfortunately, I was too weak to go through with the surgery due to my kidneys not functioning and the extreme weight loss I had experienced. Once again my life was hanging by a thread. My doctors didn’t know if I would make it, and they made it loud and clear. I was taking it day by day at that point. I was scared but knew I had to stay strong.
If you ask me how I did it, I couldn’t tell you. Miraculously, after a month of dialysis, my kidneys recovered completely and I regained a healthy weight. I was finally ready for my heart surgery.
Due to complications, there were two rounds of surgery, but in the end, I received two brand new perfectly functioning heart valves. During much of my stay, the hospital did not allow visitors due to COVID-19. I missed the support system that I relied on so heavily during previous hospitalizations. Facetime calls were our only way to see each other. Despite the hurdles brought along with the pandemic, I still had so much support and supportive messages coming from family and friends that helped me keep pushing through. After the second surgery, I was monitored in the hospital for one more month before being discharged in April 2020. With a long recovery ahead of me I went out into a pandemic prepared to fight to get my life back.
During my illness, I had to defer my nursing program until I was well enough to rejoin. Getting back to school was a top priority for me. I had to rebuild my strength while also dealing with the emotional trauma of my health in addition to what was happening with the pandemic. By July 2020, I finally felt strong enough to return to my nursing program. I jumped back in with both feet and have been working hard to do my best so I can be an inspiration for my future patients.
I am here today one-year post-op. There were times when I thought I wouldn’t pull through this one. So many times I felt so unsure about what would happen to me. It was a year of uncertainty but also one of strength and perseverance. I am happy to say that my heart is still pumping loud and clear, and my kidneys are working as they should.
In less than six months I will be graduating from nursing school. My dream is to become a Pediatric Cardiac Nurse so I can inspire my future patients and give hope to their heart parents.
I can’t always tell you everything, but I know one thing for sure; your child will be a fighter.
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