“I’m 14 years old. I put my foot on a chair to tie my shoe. You forget you are breathing until something stops you from breathing. I am hit with a ‘stitch,’ as if I have been running the mile at school, when in fact I have only been awake for 20 minutes. I have had these before, for as long as I can remember, normally lasting 10-30 seconds. It always starts on the inhale and feels as if someone has grabbed ahold of my lung and clamped down, refusing me my necessary oxygen. I am not afraid yet, because this happens often, so I hold still, willing the pain to go away, slowly let go of the breath I was taking, and try to inhale again.
Normally, if I go slow, I can push past the pain and drag a breath in. Not this time. The fingers around my heart clamp down tighter, and now I am regretting letting go of the little bit of oxygen I had taken in. I grab my rib cage, my foot sliding to the floor. I try to breathe again in vain. I am 45 seconds in, and boy does it hurt. I try again. Nothing. I am 50 seconds in, but it feels like a lifetime. Almost one minute in and I am seeing spots. I stumble to the side, crashing into my couch, using it to hold me up. Again. The pain lessons this time. Again. Tears streaming down my face I get a precious half of a breath. Again, this time a full breath, and my exhale is a sob. My mom is at work. My brother and sister are outside waiting for me to tie my shoes and walk them to school. I look around me and wonder if my death had really been that close, and no one would have been able to help me. I wipe my face and walk outside, because that was just my reality.
I was a healthy teen and I lived in the mountains, so hiking was close by and I loved it. My elevated resting heart rate was first noted around 16 years old. At 17, I collapsed at my after-school driver’s ed course. I had been hiking before the class, and don’t recall much of the details now, but someone was yelling at me, and I could see spots, and was confused as to why everyone looked like dalmatians with black and yellow spots. I was trying my hardest to breathe. I remember the concerned faces as someone held my arms up, trying to help me breathe. My resting heart rate was already in the 100’s at this point, but our small town hospital said I had a panic attack and that was that.
My senior year of high school I joined Fire Science to learn the ins and outs of being a wildland fire fighter. I loved it, and I was the top in my class. I was very strong, but try as I might, I couldn’t wear the 40lb vest required for training. Soon my heart rate and arrythmia was bad enough again to warrant several trips to cardiologists in Bakersfield, and one very painful trip to the Heart Hospital where they performed an arterial blood draw. I decided then and there no symptoms were worth going through that procedure again. With all of the doctors visits, I reached the three missed-class limit for Fire Science and they had to drop me, only to be informed by my doctors that all the appointments were worthless. ‘Your heart rate is fast and it skips, but we don’t know why. You are young, you will grow out of it.’
At 22 (2013), at a routine doctor’s appointment, the doctor casually tells me my resting heart rate of 125 is caused by ‘White Coat Syndrome,’ that I am afraid of doctors and that is why my heart rate is always elevated. He ignores me and my ‘limited intelligence’ when I tell him my heart rate is the same at home, writing me off as a possible hypochondriac, meanwhile, I develop intense hot flashes, becoming drenched in sweat in seconds, begin passing out when crouched down, begin finding it difficult to walk up the stairs, and become heat-intolerant-to the point where I could not stand being touched, and my husband was unable to lie close to me while sleeping.
In 2014, I have just turned 23, we take our family to Disneyland for the first time, feeling like possibly, this will be the only time, because my condition has continued to deteriorate. I am walking with a cane now, because my legs are so swollen, my right leg reaching almost 18” around at the calf and almost no discernable heartbeat below the ankle, and my left at 17”. I can no longer read bedtime stories to my children because I don’t have the breath to sustain. I can’t play with my children. My resting heart rate is so fast now that my husband is uncomfortable lying next to me, hearing it thrumming in his ears so unnaturally. I have no words to describe the sense of…loss I felt while on that Disneyland trip. Upon reaching the gate the offered wheel chair…my heart was crushed. To put a positive on it for my children, we allowed them to push me around and we got moved to the front of every single line, so that trip we feared would be our last, at least it was a blast, with the children getting to go on almost every single ride.
Within months (April 2014) I noticed a golf ball sized protrusion at the base of my throat. I woke up one morning (May), and my resting heart rate was well over 130 beats per minute. I went to the doctor that week. A new Primary. She took one look at my clearly visible heart beat through my diaphragm (so bad in fact it moved my shirt with every beat) and called in another doctor. She was the first doctor to ever recommend any sort of treatment, the first to ever finally admit it wasn’t in my head. She set me up with a cardiologist and an Endocrinologist. I walked out of that appointment, leaning heavily on my cane, feeling accomplished and hopeful. It wouldn’t last.
The following month (June). I was diagnosed with Hyperthyroidism, Pulmonary Valve Disorder, Mitral Valve Prolapse, and Congestive Heart Failure. I was put on Atenolol to slow my rapid heart rate, for the first time in almost 10 years of having this issue, and thyroid medication. My rapid heart rate, caused by my hyperthyroidism which they figured had been burning unchecked for many, many years, had damaged my heart to the point where fluid had backed up into my lungs and legs. If someone had just given me beta blockers years before, there was a good chance my condition never would have progressed that far. If someone had just listened. My cardiologist told me I needed to have my mitral valve replaced ‘in the near future,’ and that I should write my will and leave a copy with a trusted family member. He was dispassionate, as if this were routine. As if the mountain of happiness that was my life wasn’t crumbling around me. With my mom with me in the room asking questions, I could only hear a buzzing sound, as if the world had been muted. Looking back, this is the most prominent moment for me. My awakening, you could say.
I was angry. Enraged is more like it. I went home and got in the shower, my husband had followed me to the bathroom in silence but had not joined me. I sat in the water and cried. Harsh, wracking sobs that hurt my whole body, but I couldn’t stop. I knew my husband could hear me, maybe my kids too, but he didn’t come in, and I remember being so angry at him for not helping me. I questioned my faith in God in that shower, as my head banged against the side of the tub over and over, I asked why? But then I stopped myself. There were so many people who had it far worse than me. I had a beautiful, loving family and I knew they would be taken care of and loved even if I died. A kind of peace settled over me in that moment, and I asked God, if he were willing, there were so many other people that needed his help, to pass what grace he could give to me onto someone else. When I got out of the shower, dressed and left the restroom, my husband was sitting on the couch and I realized he had been crying too, and as he held out his arms and said, ‘Come here,’ I realized how hard just sitting there hearing my cries must have been for him, and I loved him so much in that moment I felt my heart could explode. I had needed that cry, and he had known it better than I did. What a loving man I had been blessed with. As he held me, it was reaffirmed to me how truly blessed I was. Our three and four-year-old joined us and just sat quietly.
My cardiologist had me on the strongest beta blocker, but it didn’t slow my heart rate enough. I was becoming frustrated. I began thinking back to when my issues had started escalating(the hot flashes, not being able to crouch down without passing out…), and I realized that my major problems had started showing around the end of 2013. What had I done differently that year? I recalled I had a birth control implant inserted in my arm in April. It was just a hunch, but I knew deep down I was right. I went that week to have it removed. There was almost an immediate drop in heart rate over the next week. I stopped taking my beta blockers. Within two months my resting heart rate was in the 90s! The swelling went down in my legs enough that I was able to walk without my cane. I began walking my son to Kindergarten. A mile and a half, to and from school, twice a day. At first we left almost 40 minutes before school started to give me a chance to get there, even though it was only three-quarters of a mile away. As the school year went on, it took less and less time to get back and forth.
We moved to Thousand Oaks, California, in the final week of that year and the walk to school was three miles to and from school, twice a day. I was up to six miles a day now, when before it was difficult for me to walk to the end of the driveway. That April of 2015 I got my first job. My husband was scared and asked me to only work weekends, fearful I was taking on too much. But it was one of the best things I ever did. My boss pushed me when I didn’t have faith in my abilities, I worked harder than I ever thought possible, and I was asked to become a manager within six months.
It is 2019 now. I am as healthy as a horse and I go to the gym around 5 times a week (when I am not being lazy lol). Our lives have been radically changed. We are divinely favored. My husband has a good job, my children are doing well in school, I work as a host for a restaurant, and we found a beautiful church family at Valley Baptist Church here in Bakersfield. We are the average family. And I could not ask for more.”
This story was submitted to Love What Matters by Jessica Hillstrom Mase. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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