There are some evenings when I can’t help but think about the nights when my heart would struggle to beat. By the end of the day, my blood volume would be so low because I was never educated on my health conditions or how to manage my health and had no idea what was going on. I would go all day without drinking water. I avoided salt because I assumed that’s just what you do, especially with heart issues.
Here is a quick run down about my health history:
Postural Orthostatic Tachycardia Syndrome was just a small fraction of what I had going on. Last January (2017) I was still very in the dark about my health. Even though I already had four cardiac ablations for Supraventricular Tachycardia, caused by being born with an extra electrical pathway in my heart that caused rapid heart rates and extra beats, I still never had a real team of doctors who had my back.
Wolff-Parkinson-White Syndrome made it very difficult to have a fully successful ablations due to the extra pathways in very difficult and rare spots of my heart. My electrophysiologist often noticed two P Waves on my EKGs. The P Waves are the little squiggly line that shows where the heart beat originates.
After four cardiac ablations, I needed an aortic valve repair. This is done with open heart surgery and cracking open my sternum. My aorta valve was regurgitating blood flow backwards. This caused shortness of breath and other issues.
Having the ablations did not fix my rapid heart rates. It reduced them but I still got them and often. I needed medication to slow down my heart rate but I also had bradycardia (slow heart rate) so I was unable to take medication for about a decade. I would bounce from 45 beats per minute and jump up to 150, all day. I was diagnosed with Neurocardiogenic Syncope and Sick Sinus Syndrome. This means that my heart would randomly plummet, while doing simple tasks, causing me to blackout or set my heart into a scary arrhythmia. I developed a dysfunctional sinus node. The sinus node produces your heart beat, like a natural pacemaker.
Back to 2017… As if nothing mentioned above wasn’t scary enough, including my brief encounter with cancer, January 5th, 2017 was the scariest day of my life. Unbeknownst to me, my blood volume was dangerously low and I was dehydrated and creeping up to pre-diabetic status due to a careless diet and love for sugar. I wasn’t taking care of myself the way my body desperately needed me to. My heart went tachycardia, which wasn’t anything I wasn’t used to, but then the rhythm changed to chaotic. I was going into a potential fatal arrhythmia.
We called 911 and my husband (boyfriend at the time) held me in his arms as my limbs fell to the side, with no blood flow. I was going into circulatory shock. I told him I loved him and to tell my kids I loved them and the blurry lights in the distance arrived closer. Suddenly I felt my heart convert back to a normal (but fast) rhythm and I could breathe again and move my arms. This happened again and again, several times a week, for months.
I was continuously dismissed, labeled with anxiety and even prescribed acid reflux medication for heartburn. I did not have heartburn, I was having chest tightness and pressure but this was just a small example of being disregarded and carelessly misdiagnosed. Eventually, I had a 30 heart monitor on to capture every episode. The monitor was hidden under my shirt and robe. My body would shut down before the doctor’s eyes as he mocked me and stated it was just anxiety and an EKG or heart monitor wasn’t necessary. Despite my history and the fact that I was the happiest I had ever been, I was always sent home or they couldn’t catch an episode.
Six months later, I finally found an electrophysiologist who set me up with a pacemaker that I needed ten years ago. My neurologist also looked at the tests and confirmed that what they thought looked like an anxiety attack was my body going into circulatory shock. I can also finally take heart medication to keep the fast rates at bay, now that I have a pacemaker.
Like a thick gloom, blanketing you and swallowing your body, the memories take over. There were times that I literally begged for my life. I could barely breathe and my arms and legs lost color and I couldn’t move. My body would start shaking vigorously as I took small rapid breaths. “Please help” was all I could pathetically mutter to the unconcerned nurses who assumed I was a drug seeker.
Those six months still haunt me, especially at night. No doctor EVER thought to ask, “Why does this young woman have such a unique health history?” No one thought to do genetic testing or to ask questions. They all let me slide through the cracks.
I’m here and I am still fighting. I will always fight, until I can’t anymore. I am here to stand up for others like me. I am here to inspire others to advocate for themselves and to not give up. I am still here.
Even though my story isn’t over, I still continue with sleep apnea and my aortic valve has hypertrophied. I will need open heart surgery once again, with a pig valve and possibly in the near future. I will need a new pacemaker years to come. I don’t have insurance so my sleep apnea is not being treated. I don’t know what to expect in the future but I do know that I will love every moment that I am given.
- Educate yourself on your health conditions.
- Get every medical record and keep a file
- Print information on your rare diseases or disorders to give to your medical professionals
- Find a support group or therapist
- Eat healthy and stay hydrated
I remember when I was 16, telling a doctor that I stopped breathing in my sleep. “No. Not at your age. I don’t believe you.”