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Showing posts with the label Cardiomyopathy

Grief, Grace, and a 5K

I’ve never really been one for goal setting; New Year’s resolutions aren’t usually my thing. As a fitness instructor, I never even endorsed the idea. My thoughts on goal setting were always centered on changing simple habits, finding enjoyable hobbies, and seeing how life evolves from there. I still recommend this approach. But something about surviving a heart transplant—and getting older—has made me want to aim for something this coming year. Nothing wild. Just a little something to work toward. It’s normal to come out of a traumatic experience—especially a medical trauma—feeling a little lost, or as some say, a little empty. When we think we  should  be feeling joy and gratitude, we might instead feel guilt, purposelessness, or our own version of grief. Many of us assume a transplant will change us, improve us, only to wake up and realize that the only things that have changed are a new organ and a regimen of life-sustaining medications. I can attest to all of these feeling...

The Toxic Ex-boyfriend

I have this toxic ex-boyfriend, and he haunts me. In fact, I run into him almost every day. It’s becoming problematic. We were first introduced in elementary school. I hated him then. I couldn’t understand the kids who liked him—mainly the boys in my class. He was always chosen for all the teams, and all the boys loved to play with him at recess. I personally never understood the attraction. In junior high, he started drawing the attention of some of the girls. Not me, however. I tried steering clear of him, but no matter how hard I tried, it seemed we were always partnered up in gym class. It was torture. In high school, my sister started hanging out with him a lot. She and her friends spent quite a few summer mornings and Saturdays with him. Their time together looked so easy—so fun and refreshing. Though I didn’t understand at first, you could say I was intrigued; maybe there was something there. Maybe if I gave him a try, I’d understand the appeal. And so I began a flirtation, if y...

You'll Never Shout for Joy From the Peak of a Mountain You Did Not Climb

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 If I'm being completely honest, I did not like the person I became sometimes while I waited for transplant. In my defense, being told one needs a heart transplant is a fairly big deal. It's not something that can be coped with immediately. I needed every last minute of my 18-month wait to adjust. And even then--even now--it's a hard thing to wrap the mind around. In April of 2022 I was sitting in church pondering the words I was hearing. I don't know fully if it was said over the pulpit or if it was whispered by the Spirit, but I distinctly heard the instruction to ask the Lord to know what you need to strengthen and He will tell you. And that's exactly what I did. As I sat in sacrament meeting that day, I prayed to know what I could work on and improve. The answer: Patience and Long-suffering. A few short weeks later those words would need to become a mantra of sorts--actually, more of a chastisement as the transplant process began. The transplant team, while enth...

What Happened in June

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Over the next several weeks I would return to the emergency department several times stuck in a slow ventricular tachycardia rhythm. Each time they would reset my ICD/Pacemaker to pace me out of the tachy arrhythmia at a slower and slower rate, finally settling at 111 beats per minute. That meant I could receive therapeutic pacing at any heart rate higher than 111 bpm. My activity would have to be very limited until this was resolved either through healing, more ablations, or transplant.   On June 14 th  2022, we had finished all of the pre-transplant evaluation testing and had been approved by our insurance, all we had left was actually getting listed. I messaged Sarah, my transplant coordinator at the time and asked if there was any news on that front. Within hours, she called me and told me that I was officially listed for transplant. What a surreal feeling. At first, I was a little thrilled—we were one step closer to closing this chapter, I thought. On the other hand, I wa...

When the Path Became Clear

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The journey to heart transplant began before I even knew what was happening. I started going to a new heart failure doctor at the University of Utah who began ordering specific tests. He ordered an overnight pulse oximetry test first, explaining that this test would let them know of my fatigue was caused by heart failure or, perhaps, sleep apnea. Later, I found it it's one of the many tests used in a transplant evaluation. At one of my visits to this doctor Aaron asked how often people with ARVC ended up needing a heart transplant. He told us he had some patients with ARVC waiting for transplants. I didn't understand why Aaron was asking this. I didn't and wouldn't need a heart transplant, for sure. I was relatively young and healthy, right? The doctor then explained that uncontrolled arrhythmias would determine whether I needed a transplant or not. Then he ordered a VO2 max test and scheduled a follow-up visit later in the month. Just after that follow up appointment m...

The Months That Followed

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  Following news for my diagnosis, after my first visit to a hearth failure specialist, our next stop was back at the hospital to have an implantable cardioverter defibrillator (ICD) placed. We returned to the same same-day-surgery we had been to for my ablation and, to our delight, were assigned the same nurse. Clo was the absolute best in making sure we were comfortable and felt cared for. That day, I received a single lead, ICD pacemaker and was sent home within hours to hope and pray I would never need the device. Two weeks later, I landed back in the hospital due to chest pain. I thought it was just my gallbladder, but testing found nothing. It was then assumed it was my heart, so I had to stay over night for observation. A good dose of Toradol finally knocked that pain down and I returned home with no answeres. The only question we had answered during that incident was that we needed to find new doctors. During the entire 24 hours at the hospital, neither of my cardiologists ...

The Day My Heart Broke Part 2

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I woke from sedation still in the same trauma room in the emergency department. Aaron sat in a chair not far from my Gurney, looking tired and maybe a little sad. He was still holding onto  my coat, shirt, shoes... I guess as I came to, I laughed and said something about dreaming about Halloween. I never believed those stories about people acting off their rocker while coming out of sedation. I guess I do now. (Taken later that night at my brother's Halloween party that I insisted on going to.) The doctors released me that day, but not before a firm warning not to do anything exciting, not to drink any caffeine, and to find an electrophysiologist as soon as possible. And not before I overheard a nurse commenting on how she hadn't seen someone with a v-tach heart rate so high and still conscious and talking and questioned if I should really be going home. We left that day and tried not to think about what lay ahead. It was impossible not to google and search the internet and soc...

The Day My Heart Broke Part 1

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I can't believe I'm here, in front of my trusty Mac, again to write a blogpost--something I haven't done in a decade. I'm rusty. My fingers feel tethered by cobwebs. But I feel like this story needs to be shared.  (Picture taken on a hike with my husband the night before my heart broke.) October 23rd of 2021 was supposed to be a busy day for our family. We were visiting Cache Valley for the weekend with plans to clean our property (we own a home in northern Cache County that we planned on renting to a young couple of newlyweds who were attending Utah State University), do some shopping, and attend a halloween party that evening. It was a cold and rainy morning, so Aaron and I decided to workout indoors instead of running the hills of High Creek Canyon. Aaron took the treadmill and I picked up my jumprope to get in a quick cardio session.  I love jumping rope--I'm not particularly good at it, but when you get into a rhythm with the rope, Oh man, it feels good! I turn...