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Benign



I was alone, driving north on the Chicago I-294 tollway, after a quick trip to Cincinnati ended in the failure to secure a cardiothoracic surgeon to perform a robotic completion pericardiectomy. I was contemplating my future, as I had only one surgical consult remaining on the calendar in Dallas the following week. As if on cue, a song came on the radio. It was Casting Crown’s “You’re Already There...”


From where I'm standin' Lord, it's so hard for me to see Where this is goin' And where You're leading me I wish I knew how All my fears and all my questions Are gonna play out In a world I can't control


… When I'm lost in the mystery To You, my future is a memory 'Cause You're already there You're already there Standin' at the end of my life Waiting on the other side And You're already there You're already there


… From where You're standin' Lord, You see a grand design That You imagined When You breathed me into life And all the chaos Comes together in Your hands Like a masterpiece, hey Of Your picture perfect plan


… When I'm lost in the mystery To You my future is a memory 'Cause You're already there You're already there Standin' at the end of my life Waiting on the other side And You're already there You're already there


… One day I'll stand before You And look back on the life I've lived I can't wait to enjoy the view And see how all the pieces fit One day I'll stand before You And look back on the life I've lived I can't wait to enjoy the view And see how all the pieces fit


… One day I'll stand before you And look back on the life I've lived 'Cause You're already there You're already there When I'm lost in the mystery To You, my future is a memory 'Cause You're already there You're already there

Standin' at the end of my life Waiting on the other side And You're already there You're already there


This very song that should have encouraged me in that moment, had the complete opposite effect. It shook me to my core. I flashed back to a picture of myself in my recliner, laptop on my lap. The tears began rolling down my cheeks, as my mind struggled to recall the very first time I had heard the words inappropriate sinus tachycardia. It wasn’t the first day my heart began racing, 20 weeks pregnant while pushing a Target shopping cart. It wasn’t in the emergency room that night, in my OB’s office two days later, or even in the hospital later that same day. Not even in the very first year of my symptoms. In fact, not even a visit to Mayo Clinic disclosed the name of my diagnosis. It wasn’t until 2 years after my first symptoms, a full 3 months after I had already suffered a mild stroke, that a cardiologist uttered the words of my heart arrhythmia diagnosis.


The salty tears streamed down my cheeks. I recalled digging in to research the topic on-line, typing in the words “inappropriate sinus tachycardia” or IST for short. And everywhere I read, be it the Mayo Clinic website, Heart Rhythm Alliance website, WebMD, or any other “trusted” online resource, that this was a “benign” arrhythmia that would not result in stroke or heart attack and did not reduce a patient’s lifespan. I read that it didn’t really lead to anything, so patients should just be re-assured. Although one website noted that oddly patients never seemed to get better, and in fact, always seemed to complain to their doctors that symptoms were worsening despite maximizing their medication, leading to the need for further treatment than just medicine.


The word “benign” was like a sword piercing my soul. Benign? Here I was driving home on portable oxygen from a failed attempt to get life-saving surgery, 6 years after losing my ability to run marathons and hike national parks. Benign, really?!


“Liars!” I screamed as I dug my fists into my steering wheel. “They're all liars!” The dozens of cardiologists who said there was nothing wrong. Then that changed to yes it was IST, but it’s a benign condition, so no worries. Until it robbed me of my summers. My time with my kids at the park, the heat making my heart race at times unannounced, yet certain to happen each time the temperature rose or humidity lurked. No more walks with the family, gardening, and doing the outdoor landscaping work that I loved. It took away my ability to grocery shop, forcing me to sit down on the floor at Festival to avoiding passing out, or calling my husband on the phone to come finish my shopping trip, so I could sit down. One medication, then another, then many more tried unsuccessfully. Until the arrival of ivabradine, the wonder drug according to studies in Europe. Despite a moment of improvement, higher doses were needed over time, and still more episodes, even at work in front of my patients. Along with transient ischemic attacks, occurring every other week, also in front of the patients I treated. I couldn’t do this anymore. The writing was on the wall. It was time for an ablation.


Still driving the tollway, I struggled to see. I reached for a box of Kleenex to dab the tears that kept flooding my eyes so I could stay between the lines. I had researched the SA node ablation option for months. I read every article ever published in academic medicine, three times, maybe ten. There were so few compared to the research on atrial fibrillation, ventricular arrhythmia, or heart attacks. I faced full disability, a life of nothingness confined to my bed. Or ablation, a chance to live life again with the ability to work and play with my kids. A 7-month, nation-wide expedition finally found an EP cardiologist willing to do the ablation in Texas. His experience and confidence were worth the wait.


I pondered what happened next- the unthinkable, unanticipated, the never should have happened, but it did. The complication. The worst kind. Constrictive pericarditis.

I struggled to catch a breath, the tears were still coming along with slobbery congestion that prevented me from inhaling the very oxygen that was supposed to prevent my shortness of breath while I was driving. IST is benign? It doesn’t have any long term detrimental impacts on the heart? It doesn’t lead to heart attack or stroke? It doesn’t reduce a patient’s lifespan? Tell that to my children at home who would soon lose their mom if the one remaining surgeon left to visit said “no” to doing the surgery.


I pulled out my archaic album filled with CD’s from the passenger floorboard. I had to listen to that song again. The one from Casting Crowns. This time I let the words pour over me. It was all I needed to know.


From where I'm standin' Lord, it's so hard for me to see Where this is goin' And where You're leading me I wish I knew how All my fears and all my questions Are gonna play out In a world I can't control


… When I'm lost in the mystery To You, my future is a memory 'Cause You're already there You're already there Standin' at the end of my life Waiting on the other side And You're already there You're already there


#inappropriatesinustachycardia #rarediseaseawareness #raredisease2021 #DoctorHealThyself

 

Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian mom of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.


Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any activity with her three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, playing piano, singing, and coaching a middle school basketball game or two.


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