COVID19 Delta Variant – My Personal Journey
I have the medical history of an 85-year-old who’s lived hard and not taken very good care of himself. I recently turned 73, but 85 is a more accurate description of my condition. The relevance is that I have symptoms of COVID19 24/7, so figuring out when things started is a bit difficult. Last week I felt weaker than normal, but gave it little thought. I also have mild expressive aphasia – reaching for words and can’t find them. Not as severe as President Biden, but irksome nonetheless.
This is compounded by two incurable fatal diseases, COPD Stage Three and Late-Onset Hydrocephalus, which have robbed me of mobility and severely limited my activities. Thus, I was probably exposed some time between Thursday August 19 and Thursday, August 26. How, I do not know. I have been housebound for more than two years, and my family quarantined me beginning February 1, 2020. I knew that WHO was lying about COVID19 not being human-to-human transmissible, so we limited visitors to those in full PPE until I could be vaccinated. My wife and I were fully vaccinated with Moderna in February 2021; our youngest daughter, who lives with us, was fully-vaccinated with Pfizer in May 2021. Both women spend time outside the home most days, helping elderly neighbors and running the church food bank. That introduces some element of risk, but we must live and help others do so as well.
The first indication of impending trouble was when my body stopped responding to commands from my mind. I’ve always just thought about standing up, and I was immediately upright. Thinking Walk to the left always found my body obeying the thought. That ceased on August 25 or 26, and has not improved.
Things began going sideways on Friday, August 27. This was a breakthrough infection, overwhelming my vaccine-assisted immune system with a very high viral load. I had difficulty standing up, and was slurring my words. Overnight it got worse. I would tell my wife I was getting up to use the rest room, and then be stuck in place. By Saturday morning I was too weak to dress myself, and too uncoordinated to do so even had I had the strength.
By late afternoon I couldn’t move, and was incoherent. My daughter called the fire station and asked for an ambulance. It appeared within two minutes; the driver reasonably assessed that my symptoms could indicate a Transient Ischemic Attack (a mini-stroke), which required him to take me to the nearest hospital instead of the one I requested. That accounted for the most frustrating part of my journey.
Facilities, labs, imaging, administrators, physicians, therapists do not constitute the hospital experience, at least from the viewpoint of the patient. Nurses do. They are all-powerful, All are overworked, underpaid and underappreciated. Most are excellent performers. Some don’t quite make the cut. A few are actually very bad at their jobs. And a very limited number are genuinely malevolent.
We call the hospital nearest to us Survivor Island. That is because the quality of the nursing staff is at best spotty among the wards. Our youngest daughter was treated there frequently during the period 2012-2017; all told, she spent about 18-20 months hospitalized there. She was ignored, humiliated and physically harmed by nurses. Of that period, I recall perhaps two weeks of competent nursing care. She has since switched to another of the three separate hospital systems in Nashville. I had been hospitalized there three times; three times too many. I, too, had switched to a different hospital system. Once you’re checked in, you belong to the nursing staff.
No visitors are allowed. I was too out of it to know what was going on, or to answer questions intelligently. The mind-body disconnect, and the weakness, were still there, along with the expressive aphasia. Not to worry, the nurses had it all taken care of. They installed a secret sensor in my bed, so that if I began to nod off they could arrange for a phone call from the cafeteria to ask me if I wanted one percent or two percent milk the next morning. After eight hours, 80% of the brain fog had cleared, and I learned that I had been treated according to protocol for a breakthrough infection with the delta variant; I had been given a single dose of remdesivir. The weakness was not at all improved, nor the mind-body disconnect. The cognitive functions would be adequate to manage my own care.
Having resolved most of the worst impact, the nurses started on their first priority: sleep apnea. I have no idea where they got that; I was diagnosed with sleep apnea in 2002. I wore a CPAP machine for less than two years and stopped. The nurses give me no information, just forced me into a complex contraption they called a BIPAP machine – essentially a diving helmet designed by the Marquis de Sade – and when I tried to object was labeled uncooperative. Eventually I struggled out of it and related my history of sleep apnea, and attempted to tell the nurse about my areas of concern. The Delta Variant had kicked my Normal Pressure Hydrocephalus into overdrive, and I was in trouble. I told her that I had my first shunt installed in February, 2019. “Well, I don’t believe that. If it was normal pressure, you didn’t need a shunt.” Turned on her heels and walked away.
I learned that I could get 650 milligrams of acetaminophen for pain, called and asked for some. Called four more times over the next six hours, and was told the message would be passed on to my nurse. After six hours, my nurse came by and informed me that she had received a note fourteen minutes earlier that I wanted acetaminophen for pain. I informed her that I had a constellation of neurological disorders, most of which caused head pain, and some were quite serious. “It’s just a headache.” I told the nurse, and every one I encountered thereafter, that nothing was going into my body unless I was told in advance what the medication was, what the dosage was, and why I needed it. It was a spoof of “Fifty First Dates.” None was listening, ever.
A nurse handed me a pill later and told me to take it. “What is it, what is the dosage, why do I need it?” Just take the pill. “Not until you tell me what it is, what the dosage is, and why I need it.” Nothing. It was a steroid. “I am not taking a steroid, I believe steroids were implicated in reducing effectiveness of my immune system allowing the breakthrough infection to occur.” No, short term steroid use doesn’t affect the immune system.
“What do you give a patient to interrupt the cytokine storm?” Steroids. “And you’re going to wait until two weeks after the patient’s death for it to have an effect?” Only long-term steroid use affects the immune system. Not listening. And, I’m uncooperative.
The illness kicked my normal pressure hydrocephalus into orbit, meaning I had no sense of balance, was shedding IQ points faster than virus particles, and had zero bladder control. That has not abated. The loss of IQ points has slowed, but not reversed. I’ve been back home since Tuesday August 31. Both my wife and our adult daughter are also suffering from breakthrough COVID19 infections. They have both lost their senses of smell and taste. This is the worst single setback I have ever experienced. My wife and daughter are both scheduled for monoclonal antibody treatments over the next few days. I’m frustrated that I’m a burden and can do little if anything for either of them.
The delta variant is indeed a new virus. It breaks all the rules followed by the original and all subsequent variants. Being fully-vaccinated means fewer hospitalizations and deaths, and shorter hospital stays. But this is not a pandemic of the unvaccinated. And, refusing to acknowledge the value of acquired immunity from infection is contrary to all prior virus research.
I was not an unvaccinated person; there is no approved third dose of Moderna. I am not an anti-vaxxer. It’s now past my bedtime, and as soon as I can muster the strength to stand up, I’ll go to sleep.
I have experienced no improvement since arriving at home. It is my sincere belief that this is the beginning of the end. So be it.
Bill, I subscribed to your substack several months back after coming across you on Taibbi's comment section. I hope you are recovering and above all not in any major discomfort.
If you produced this meticulous "meta-story" of your medical catastrophe you seem to your readers to be in mental control (with a vocabulary to be envied). I know medical staff get tired and having spent many years in the VA system with my husband during his decline and death I know you need an advocate. This was pre-COVID so I don't know what they allow now. No one should be in the hospital alone. Please keep us updated. Prior to the announcement of COVID and pre-vaccination I experienced much of what you explain including lost of taste and smell. I thought I had a bad flu.I still haven't been tested tho I have been vaccinated. I seem to be carrying on in a fairly hot spot (GA). I hope your getting this gives you more anti-bodies and you continue to recover. Really rending.