Confused about Monoclonal Antibody Treatments? So was I.

A lot of people have asked, and since I have done some amount of personal research on this here’s what I’ve learned about the various monoclonal antibody treatments.

Due to a close-contact Covid exposure before Christmas, my transplant team recommended I get a monoclonal treatment. They sent me to the Florida State-run free monoclonal infusion website and I made an appointment and went last Wednesday and got the Regen-Cov infusion.

Currently in the US (as of 1/5/2022), there are four different approved monoclonal antibody infusions:

  • Regeneron – REGEN-COV (Casirivimab and Imdevimab) – 4 injections, each arm and 2 in stomach
  • Eli Lily – (Bamlanivimab and Etesevimab) – Administered via IV.
  • GlaxoSmithKlein – (Sotrovimab) – Administered via IV
  • AstraZeneca – Evusheld (Tixagevimab/Cilgavimab) – 2 intramuscular injections

As of last week, Florida was only distributing Regeneron and the Eli Lily brands. The GSK one is the version that data points to being the most effective against Omicron, but you can’t just assume you know which variant you have or been exposed to. Unless you’re doing some fancy test that the rest of us don’t have access to, the particular flavor of Covid anyone has is an unknown. While Omicron is the most common out there at the moment, there is still plenty of Delta around.

The AstraZeneca one isn’t recommended for people who have Covid or been exposed, but as a preventative for immunocompromised people who for whatever reason can’t do vaccines.

Like I said, I got the Regeneron 4 shot injection. After the injections I waited in the waiting area for about 30 minutes for observation before I was told I could leave. I didn’t notice any side effects at all.

Hope this info helps someone!

Florida Monoclonal Antibody Website

Orange County #Florida ICU Bed Data 7/20/2020 #covid19 #orlando #orangecountyfl

ICU Bed Capacity across Orange County has increased since 7/8, but so have the number of occupied beds.

Orange County FL Adult ICU Hospital Data 7/8 – 7/20
Orange County FL Pediatric ICU Hospital Data 7/8 – 7/20

Data Source: Florida Agency for Healthcare Administration Hospital Bed Census Data

Living in Fear of COVID-19

Am I afraid? Yes.

I’ll admit it…I do live in fear. But I don’t think it’s the same kind fear as what the anti-mask crowd is calling “living in fear.”

I am afraid that if anyone I love or care about falls ill because of COVID-19 (or any highly communicable disease for that manner), that I won’t be able to be with them when they need comfort the most.

Having spent more time than I imagined in a hospital from March-May while waiting for a life-saving liver transplant, I know all too well how much having visitors helped keep my spirits up. Social media certainly helps, but there is nothing like being able to hold someone’s hand or hug them or just simply watch a movie together. To have someone bring me a McDonald’s Shamrock Shake or a Smoothie, drop off some comic books, some Twizzlers, Dinner from Maxines’s, play some guitar for me…anything from the outside world… helped.

The sterile environment of a hospital room can be a very lonely place.

And it’s a very scary place, especially because you’re there because you’re sick and not because you want to be. And despite having the best care and the most wonderful doctors and nurses, they can’t replace your friends and family.

When I first went to the hospital there were no limitations to who could visit me or even when. If someone didn’t get off work until 2am they could come see me in the middle of the night. I could have 4 people visit at the same time…the only limit was how many people could fit in the room and how many I had the energy for in any given day.

But as Covid-19 appeared, restrictions started happening. Visiting hours became limited as did the number of visitors. At one point it came down to one approved visitor per day and so I literally had to choose. But at least I still had a choice.

COVID patients don’t even have that luxury. They are prevented from having ANY visitors. Their interactions are limited to FaceTime or Zoom meetings or maybe a live visit through a glass window. They are at possibly the most vulnerable, helpless time of their life…possibly the end…and yet can not even find a tiny bit of comfort from the presence of the people they love.

That’s my fear. And any time I hear someone who mocks that fear by saying that we are acting out of “media-induced fear-mongering” or that “Covid is a hoax” or anything like that it just makes me sad. Because I know that they must not have ever experienced true loss or felt love. Theirs is a much more deep-rooted fear that I don’t and will never fully understand. Wear a damn mask!

23andMe Data Suggests Blood Type a Factor for COVID-19

The DNA testing company 23 and Me has been using their massive data sets to assist scientists with analysis in how COVID-19 spreads and if genetic factors play a role in determining how likely someone is to get infected and how severe the infection will be.

While not definitive, some of their early data seems to confirm that blood type may be a factor in transmission and immunity.

“In percentages, in the entire population, individuals with blood group O were 9-18% less likely to test positive when compared to other groups. “Exposed” individuals with blood group O were 13-26% less likely to test positive.”

Read more: Large Study Suggests Blood Type O May Be a Protective Factor Against COVID-19

Orange County #Florida ICU Bed Data 7/8/2020 #covid19 #orlando

Here are the latest numbers for ICU Hospital Beds in Orange County, Florida as of 7/8/2020.

Orange County Hospital Data 7/8/2020Adult ICU CensusAvailable Adult ICUAvailable Adult ICU%Total Adult ICU CapacityPediatric ICU CensusAvailable Pediatric ICUAvailable Pediatric ICU%Total Pediatric ICU Capacity
ADVENTHEALTH ORLANDO1464523.56%191262650.00%52
ORLANDO HEALTH – ORMC6500.00%65000
Image of Data

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.