I have faced health problems my whole life. As soon as I was born, the doctors and my parents couldn’t help but notice and worry about how large and abnormal my feet looked. A few years later, I also developed a large growth in my groin along with significant stretching of my spinal cord. When I underwent my first surgery at Children’s Hospital in Boston, I began a journey full of obstacles. It seemed that every few years I faced another surgery. In fact, the word “surgery” became so commonplace that whenever the doctor mentioned it, I became numb to the discussion, just thinking about the postoperative pain that I would experience.
Such was the thought that ran through my mind when my orthopedic surgeon told me at the age of 15 that my scoliosis had progressed to the point that wearing a brace was no longer effective and that surgery would be the only option. With gloom, I read the preoperative information instructions and noted that I could experience at least 4-6 weeks of pain. I noted that several physical activities would be completely off limits, such as skydiving and bungee jumping, 2 activities that I had hoped to potentially experience somewhere in my lifetime. Little did I know that within the following few weeks, pain would be the least of my trouble.
My surgery was on May 19, 2011, and as the effects of the anesthesia wore off, I woke up to find out that my operation was a success and that my doctor was more than pleased with the results. Although resting that night was impossible (since when have patients been able to sleep peacefully in a hospital?), I woke up the next morning feeling hopeful that within the next few days, I might be able to start walking and eventually be discharged from the hospital. My goal was to make it to my school’s end of the year award ceremony and surprise all of my friends, who would have still expected me to be in the hospital. Unfortunately, that never happened.
It all came out of nowhere. I was lying in the hospital bed, when suddenly I felt immense chest pain and shortness of breath. My heart rate rose rapidly from 90 to 140 beats per minute, and I was placed on oxygen. A CT scan showed that I had suffered a massive bilateral pulmonary embolism (P.E.). An echocardiogram was performed and showed that I had a severely dilated and weakened right ventricle as a result of the P.E.
Over that weekend, several physicians came to the intensive care unit to discuss my case. Several options were presented, some seemed unnecessary and others downright extreme, including taking me to the operating room to surgically remove a blood clot by performing open-heart surgery (thankfully, the cardiac surgeon felt that this recommendation was too extreme for my condition). My parents rally did not know what decision to make, and this was made more difficult by the fact that my father is a Cardiologist. Fortunately, I had tremendous family support. The most difficult part of the ordeal was seeing the tears in my younger brothers’ eyes, which only magnified my pain. After much deliberation, the doctors proposed a unique recommendation: to insert special catheters into the pulmonary arteries, through which they would administer tissue plasminogen activator (tPA), a clot-busting medication. However, there was a significant risk of bleeding, specifically into the spinal cord, which could have lead to permanent paralysis. The other option was to continue the present treatment. Both options were presented to me, and it was quite easy to make a decision. I wanted an immediate result and chose the former without hesitation. The procedure was successful, and my breathing improved immediately. I later found out that I became the youngest person (15 years) in the world to have ever undergone that procedure.
The news of my story spread quickly throughout the academic community. This is how I became acquainted with Dr. Samuel Goldhaber and the North American Thrombosis Forum (NATF). I was invited to Boston in September 2011 to participate in the NATF closed working group session and attend the annual NATF Thrombosis Summit. After recounting my story on the patient advocacy panel, I was elected the Young Adult Representative of the Patient Advocacy Committee, charged with the mission of spreading awareness of the dangers of DVT and PE to my community.
As November 2011 approached, I looked forward to Thanksgiving and the fact that I was going to be able to finish my therapy with twice daily injections of Enoxaparin. I could see the proverbial light at the end of the tunnel. However, only a mere 2 weeks after my last injection, I woke up in the middle of the night with extreme chest pain and ended up fainting in my kitchen, only to wake up and remember seeing my parents trying to revive me. I could vaguely remember my mother frantically calling 911. I was once again back at Arnold Palmer Hospital, only to find out that I had suffered yet another massive bilateral P.E. I now face the prospect of being on anticoagulation for the rest of my life.
I will not allow my health problems to become an obstacle, nor will I be defined by my health. I spoke to my entire high school on the dangers of deep venous thrombosis and pulmonary embolism. The most rewarding experience was establishing an NATF patient support group in Orlando, one of only four such groups in the country. I will look forward to helping people in the future and making a difference in the lives of others. This is the beginning of the new road in my life, and the beginning of a new road for others.