My name is Kristyn. On August 19, 2014, I had two massive heart attacks followed by 20 more. This began my medical nightmare that resulted in a heart transplant, losing my right leg above the knee, and many months in the hospital that included sepsis and almost dying from pneumonia.
I had been on birth control pills and the NuvaRing in my early twenties without any problems. After I had my son, my periods were very irregular so I went back on the birth control pill (Gildess FE). Within a week or two of starting the pills, I began to feel unwell. I had no energy at all, and I was spotting. My hands had also been going numb, on both sides. I called my gynecologist twice to discuss my symptoms, but was told to keep taking the pills, and that things might improve.
I was at a kick boxing class, when after class I started feeling weak and dizzy with significant tunnel vision. I walked back into class to get a ride home, but I didn’t make it far before I had to lie down. An ambulance was called and on the way to the hospital I had 2 heart attacks. As they tried to reestablish my heart rhythm, I had 20 more heart attacks. I also had a stroke during this time, caused by the heart attacks. After being defibrillated 13 times my heart function was at 5%; my heart had basically been fried by the defibrillation.
The doctors put me in a hypothermic state and helicoptered me to Cedars Sinai, where I spent the next 6 months. Before I had been transferred, the doctors had tried to put me on extracorporeal membrane oxygenation (ECMO). This is used in people who don’t have enough heart or lung function to get oxygen into the blood. In attempting this, a needle that was too large was used in my leg. This shredded the artery and the muscle, and I lost the blood flow to my foot. This resulted in gangrene in my foot, and by the time I was booked into an OR in Cedars Sinai, the gangrene had spread up to my knee. Therefore, my leg had to be amputated above the knee.
I was found to have blood clots everywhere. In addition to the clots in my heart that caused the heart attacks, and the clot in my brain that caused my stroke, I also had clots in my leg, pelvis and neck.
While I was waiting for a heart transplant, I became septic. After surviving this with the help of an experimental drug, I became sick with hospital-acquired pneumonia, and once again, almost died. Five other patients in the ICU also had pneumonia, transmitted through hospital staff, and two of the other patients actually died. I survived, but was on a ventilator for two and a half months and had to learn how to breathe again.
While waiting for a heart transplant, I couldn’t be on ECMO for the whole waiting period, so I became the only patient in Cedars Sinai to ever have both a left ventricular assist device and right ventricular assist device (LVAD and RVAD). These are surgically implanted, battery-operated mechanical pumps that help fulfill the functions of the heart. I eventually received a heart transplant from a 19 year old college girl named Chandler.
I was extensively tested for blood clotting disorders and rheumatological disorders to try to explain how this would have happened to me. However, all the test results came back normal. It seemed that my only risk factor was the birth control pill.
Before the heart attacks, I was living a normal life with my family. The week before, I was hiking with my husband, parents, and two and a half year old son. The day of my episode, I had five other children at my house for a pool party. Hormonal birth control turned my life upside down.
Real Risk Study: Birth Control and Blood Clots
Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.