When I was born, I started turning blue (known as cyanosis). My mother’s doctor in Denison had me care-flighted to Medical City. Once there, they sent me to Children’s Medical Center. They did tests and concluded that I was born with a congenital heart defect known as Tetralogy of Fallot. The word “tetralogy” indicates that there are four abnormalities when ToF is present. Two of my main problems were that the valve used to pump blood to my outer extremities was missing, and I had a hole in my heart. I had my first surgery on October 13, 1990, when I was barely one day old. The doctors put in a temporary shunt to basically keep me from dying until I could have a total repair surgery. They said that they did not want to operate on a newborn heart unless it was absolutely necessary. I had my open heart surgery to repair the birth defect on January 31, 1992, when I was fifteen months old.
Babies who are born with ToF are supposed to have regular check-ups done by a cardiologist, usually every eighteen months or so. During the course of my life, my parents gained and lost insurance due to their income. While I was still covered, however, my cardiologist told my parents that I would probably need the valve that was constructed for me replaced when my heart reached adult size, because the valve would not grow with the heart, thus not allowing the heart to pump properly. According to the American Heart Association, “Some long-term problems can include leftover or worsening obstruction between the right pumping chamber and the lung arteries. Another problem can be a leaky pulmonary valve and enlargement of the heart’s right side. Patients with repaired Tetralogy of Fallot have a higher risk of heart rhythm disturbances called arrhythmias. Sometimes these may cause dizziness or fainting.”
In 2007, I was without insurance and started having symptoms concurrent to those attributed to patients whose valves had been repaired initially and were beginning to malfunction as described above once they entered adulthood. I voluntarily went a local emergency room, but nothing was done. I also visited my former pediatrician in 2008, who suggested that I see a cardiologist on the grounds that he suspected that I had acute ventricular tachycardia. However, I was again unable to see a cardiologist for lack of funds.
I dealt with these issues up until early 2011. In April, I had to be taken to the emergency room by ambulance because I could not breathe, walk, or talk, and my heart felt like it was quivering and skipping beats. Once there, they put me on an EKG machine and gave me a halter monitor to wear for a few days, which would then supposedly be analyzed by a cardiologist, but yet again, there was no way to see a cardiologist because I could not afford it. After this, I visited a local general physician at a clinic that has a fixed rate for all doctor’s visits. He diagnosed me with tachycardia and angina, simply from my descriptions, because he could not “catch it” with his stethoscope. No additional tests were done. Again, I was told that I needed to see a cardiologist, because he could not do more for me, as he was not a specialist in that area. He informed me, however, that he strongly believed that it had to do with the valve that I had repaired when I was fifteen months old, and that I should see a cardiologist soon. I told him that I had no insurance and no way to pay to see a cardiologist, and he gave me a prescription for a beta-blocker, that acted as an anti-arrhythmia medication. It helped for a while, but when my prescription ran out, the doctor refused to refill it.
My symptoms are getting progressively worse and I have been forced to quit college and stop working, because the strain is too much on my heart. I am getting denied insurance coverage by every company that I apply to because of my pre-existing conditions. I can no longer do simple, everyday tasks such as laundry or grocery shopping, because these “attacks” happen more severely and more frequently when I am active. However, they also happen when I am at rest; sitting in a chair or lying in bed. I feel as if I will pass out, and sometimes I do black out for a few seconds, my heart sort of shakes and quivers and seems to skip beats and I cannot breathe without gasping for air. I have now been diagnosed with infundibular pulmonary stenosis, collapsed lungs, hypertension, and an enlarged right ventricle. It has been determined by my cardiologists that I do need open heart surgery in the very near future to continue to live. Now, I need an MRI to determine when I'll need the surgery. I am currently on Toprol ER to help keep my symptoms under control.