Liver Update: Hemoglobin

So, my battle with my liver has landed me in the hospital once again. I went yesterday to get some routine blood tests and they came back with a dangerously low Hemoglobin Count of 6.3. The normal range for males is 13.5 – 17.5. Because the liver carries out over 500 functions in the body, when it’s not working as designed, it can lead to many other illnesses. One common symptom is anemia, which I have, which basically translates to less oxygen in my blood.


How do they fix it? Blood transfusion. Since this rollercoaster ride began back in September of 2019, I’ve probably been given 15 or more pints of hemoglobin-rich blood to immediately give my system a boost.

So I’m back again…still determined to beat this thing, and hoping that healthy donor liver becomes available sooner rather than later. I was told l would likely wait 1-4 months before the right organ becomes available and we’re just passing into month 3 since I was officially put on the national donor list. Unfortunately a partial transplant from a living donor is not an option in my case, but thank you to the several family and friends that have offered…that’s truly amazing.


Advent Hospital in Orlando is one of the top liver transplant hospitals in the world, and I am lucky to live only a few miles away. My team of doctors, nurses and techs are caring, knowledgable and treat me like a member of their family, so I try my best to keep them entertained (my current leading complaint I tell them that I specifically requested an oceanside view) 🙂

The hospital itself is relatively empty, no visitors due to Covid-19 and they have all of the Covid patients quarantined in a different building. I never ever thought I’d be dealing with liver disease, compounded by a worldwide pandemic. The Universe keeps throwing curveballs at me.
But when life throws you curveballs, you gotta make some curveball-ade!
– Diggz

P.S. Thank you all for your continued support of kind words and gifts of home-cooked meals and my special team of family and friends who check in on me multiple times a day. I feel truly blessed knowing so many people care, which is one reason I try to post updates like this one. You can also help by making a tax-deductible donation at http://donate.diggz.org.

Sometimes Behaves So Strangely

One of the first Radiolab episodes I ever listened to from 2007 features Diana Deutsch, a professor specializing in the Psychology of Music, who could extract song out even the most monotonous of drones. (Think Ben Stein in Ferris Bueller. Bueller.)

I remembered this when I was tasked to create a unique ringtone for Tropo’s Phono WebRTC client. Few actually know that I borrowed the ringtone for Phono directly from this Radiolab episode.

Have an Ordained Minister Marry you via Video

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The downside of saying “Get Well Soon”

I never really gave it much thought until facing my own terminal illness. The phrase “Get Well Soon”…it’s everywhere, embedded in the cultural consciousness through greeting cards, balloons and cakes. Sounds great, right?

Here’s why it falls:

As someone with a terminal disease, the phrase can feel flat and almost robotic. I know anytime someone posts that phrase on my page, I would hope they would take the time to say something a little more and think about an alternative phrase. Some suggestions:

  • Sending you healing vibes
  • You are in our thoughts
  • praying for you
  • let me know if there is anything I can do, please let me know
  • I made a donation on your behalf
  • (hopefully you get some of your own ideas out of these suggestions)

This is not to say the intent is missing as anyone who has dealt with a life-threatening illness.

For more ways to donate to liver transplant patients, tax-free click here

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.