Life’s Got A Rhythm, May As Well Dance To It

In May of 2016 I was slotted to start Epclusa pending a blood test. While I had pushed my doctor to do an off-label Harvoni then Zepatier, Epclusa was about to be released and it was cleared for use with my last MELD/Child-Pugh score. Epclusa has a restriction regarding extreme liver damage, so patients who are too sick (with a Child-Pugh B or C)  no longer have the option of taking it.

I was borderline Child-Pugh B the last time they’d checked my liver. So I was on the edge of my seat, knowing that it was far more likely that I would become ineligible for the medication.

Finding ways to combat symptoms

With the jaundice visible in my eyes from time to time it wasn’t entirely surprising. My ascites were getting more frequent. And the diuretics I’d used to control them became increasingly more taxing, causing violent muscle spasms if I were unable to drink enough water or have the right balance of electrolytes that day. Every place I frequented I kept a bottle of lactulose, to ensure that if I were stuck in a loop and my hepatic encephalopathy had me fogged down I could be okay.

With time looking more and more scarce I decided on something I could try. Something I could do.

The most effective measure I’ve ever seen in my part of managing of the symptoms of liver disease is routine. Routine kept me physically active mentally alert, and it helped me keep as healthy as I could be otherwise. However, my routine was lacking something which would tie physical exercise, small bits of memorization (tied to different parts of memory), and measurable goals.

So, I learned to dance

While my instructor would teach me a handful of different types of dance, it was tango which struck a chord, so I learned it exclusively from then on.

The ability to learn the patterns at my own pace, to keep a regular schedule and to memorize it. With the aid of muscle memory, music, and my instructor’s unusual facial expressions, it became a new tool in my fight against hepatic encephalopathy.

Meeting my goals and learning to dance over the months kept me moving in more ways than one. It was motivation when I would have bad days. It was a sense of accomplishment when I felt that I could do nothing. And most of all it was fun.

Each night my Fitbit would remind me I’d dance ten to fifteen thousand steps that night. And to fight off any potential muscle spasms I’d made a mix of nuts: dry roasted macadamia nuts, lightly salted cashews, dry roasted almonds, and honey roasted peanuts. The different types of fats, proteins, sugars, potassium, sodium, magnesium, calcium and other vitamins within the mix would balance my electrolytes and give me the energy I needed.

But as time would pass, my learning was slow, around two months later, in August, I’d begun to master the basic moves. In truth, I wasn’t entirely invested in it until I somehow vomited something purple and was told by the ER that it wasn’t anything concerning. But in that episode, my blood draw would prove otherwise.

A few days later my doctor informed me that my INR was at 1.9, bilirubin solidly at 9, my MELD was nearing 30 (Child-pugh score: C) and I was no longer eligible for Epclusa even though we had managed to get it approved month before all of this.

So I danced even more. I was at dance class two to three nights a week. I began expanding my repertoire and learned salsa, merengue, cha cha, and foxtrot.

I had prepared myself for anything I could that way. Because when life changes tempo, you must change the dance if you wish to keep the routine.

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