Out of the Oven and into the Fire

I was discharged from my recent visit to the ICU. One of the more disturbing side-effects of my liver disease is the danger of ammonia building up to near lethal levels, causing my brain to shut down and putting me into an “altered state” (a somewhat nicer sounding medical term for Hepatic Encephalopathy).

Hepatic Encephalopathy, sometimes referred to as portosystemic encephalopathy or PSE, is a condition that causes temporary worsening of brain function in people with advanced liver disease. When your liver is damaged it can no longer remove toxic substances from your blood. These toxins build up and can travel through your body until they reach your brain, causing mental and physical symptoms of HE.

I have had 3-4 instances of HE occur (that I know of) since October of 2019…fortunately I have had others around me that know the signs (I can’t do simple math, memory loss, paranoid confusion). After the last major incident which occurred on the morning of Thanksgiving last year, it took four adults to get me into a car to go to the hospital…that’s how bad it got. I woke up in the ICU with a breathing tube respirator and a catheter and connected to all of the machines they possibly had (including the one that goes BING!) #montypythonmeaningoflife

I take meds every day in the morning and at night to help my body flush out the toxins before they build up, but sometimes they just do and that’s what happened a week ago. I have set up a simple text messaging where I text close friends and family twice a day…and if I don’t text by 9am AND 9pm, phone calls start coming in, and I continue to fail to respond, someone will bang on my door…which happened last Wednesday morning.

I failed to send my 9am text message…my mother texted the group asking if anyone nearby could stop in and check on me. My friend Josh Egan, who lives just a few blocks away, found me in my bed, unresponsive. Another friend, Jack DeMarco, arrived a few minutes later, EMT was called as my heart rate was dangerously low…I was in imminent danger. They rushed me to ORMC Trauma and then later at Advent ICU after I was stable enough to transport. I remember none of this…other than waking up very groggy and slowly in the Advent ICU. It was early on Friday…I had no idea where I was but I was pretty certain I was in the hospital. My mother showed up a few hours later and by the end of the day I was transferred out of the ICU and into a normal hospital room at Advent, where they kept me for a few more nights to make sure I was good to go.

Now I’m back home, thankful as ever for the love and support of my friends and family for helping me get through yet another hurdle in this fight for my life.

I started this by saying I was out of the oven and into the fire… well, now to complicate my already complicated mess, is the CoronaVirus. My immune system is already compromised by liver disease AND I have asthma, AND it’s the peak of allergy season in Florida. TRIPLE THREAT!

Hopefully you are keeping healthy and listening to sound medical advice and not “hunches” or spreading false information. I am still on the liver transplant list, and could get the call at any moment. My specialist at the Advent Transplant Institute assures me that they will be testing every liver donor for exposure to Coronavirus and they will be rejected if they test positive. Transplants are still happening, but it is a fluid situation that parameters are changing every day as new medical information comes in. I am still optimistic that together we can beat this. I feel that seven years at Burning Man, learning things like “Radical Self Reliance” have helped prepare me in immeasurable ways (more about that in a future post).

For now, I’ll be home, self-quarantined and discovering new things about myself and what’s most important to the world around me.

One thought on “Out of the Oven and into the Fire

  1. Johnny! I (selfishly) wish we had met earlier in my career, we have so much in common, I’d like to think we would’ve been best of friends for life. You are an amazing soul and had an incredibly huge and POSITIVE impact on the world! It’s easy for me to see because you do and have done things that I only ever dreamed of doing. I hope and pray you beat this (not so selfishly) because I know you have so much more to give, to your family, and to the world!

    Love and light to you and yours by brother!

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