Tristan's COVID Nightmare
Donation protected
I’m trying so hard to stay positive, morbid humor and all, but this has devastated me.
Allow me to chronicle all this from the very start, I will attempt to be as succinct as possible.
2020 began like any other year, only with hints of what was to come buried in world news.
In March, just as Illinois was seriously considering lock-downs, my employer took the opportunity to let me go (I was not the only one, there is a pattern to the apparent madness). A week or so later, we were under a statewide shutdown. Initially, I did not think much of it other than it was what we all needed to do for our fellow citizens and ourselves. That, and I had enough in savings to go at least six months plus a handful of credit cards to live minimally.
From day one, I always wore my mask, kept surfaces clean, and only visited the grocery store and pharmacy. All considered, I did everything right; no parties, no meet-ups, no unnecessary travel. I had good reason, too: I have Lupus SLE—compounding that with an (especially) unknown disease could wreak havoc on my body and quite possibly kill me.
As the weeks went on, I settled into a new routine. We all did. In late September, I started to notice that I was grinding my teeth more than usual, as well as a drastic change in the frequency and consistency of my restroom habits and blood coming from places it generally should not. Eventually, a filling from years prior fell off one of my front teeth and a day or so later, part of the tooth next to it literally crumbled. Alarmed, I spent the next day looking for an emergency dentist who accepted my new insurance (I lost the previous insurance with job loss) to repair them and settled on one who was in close proximity to me. I had never been to this office before and long story short: never, ever again. His ‘fixes’ fell out within hours and after official grievance with the powers that be, I have been fighting my insurance ever since. The rest of the details are for another day. Hopefully they will be properly, professionally repaired (along with some new fractures (this will come up later)) before the end of the year.
The new routine continued a few more weeks. I had not an inkling that my entire life was going to change forever as I fell asleep feeling perfectly fine on Sunday, October 18th.
Around 03:00, early Monday morning I awoke suddenly feeling as if the bedsheet was strangling me. I fought hard to get it off of me. I was drenched in sweat and boiling, yet the feeling of drowning endured. I threw myself off the bed onto the floor and struggled to position myself on my knees and elbows in effort to take a deep breath, something I fast realized was horrifyingly futile, and in that moment I knew exactly what it was. I crawled up the nightstand with my hands and made it to my feet. I staggered all over the condo attempting to pull things together in what felt like a drunken, breathless stupor. The brain fog was fully evident, then I found the thermometer and took my temperature: 104.5F--it was more likely that the fever and lack of oxygen was confusing me. Bracing myself against walls and furniture, I collected my medications, medical history file, socks & underwear, and my phone charger. I called 9-1-1 and alerted them that they would need to arrive prepared to transfer a likely COVID patient. My speech was forced and slurred, that’s when the coughing began and it was painful. With each fit, I thought I was going to seize, faint, or have a heart attack.
The hospital is less than two miles away, although the ambulance transfer felt like an eternity. The ER was already prepared with an isolation room and I was made to hold back the coughing while I was wheeled through the public areas and until the door to the private room was closed. It was in that brief time that I noticed just how much pain I was in: between a raging headache and extreme joint pain (primarily in my lower body), I soon began to vomit uncontrollably. In short order I was having my brain prodded through my nose. I was supplied high-flow oxygen due to my saturation rate slightly lower than 90%. The first rapid test came back negative. The second was inconclusive. I was told directly that the rapid tests are not as trustworthy as many may think. I had a CT as well as an x-ray of my chest which showed I was accumulating liquid in the lower lobes of my lungs. Given the sudden onset, the symptoms and signs; I was then diagnosed with both acute COVID and lower-lobe pneumonia. The on-call pulmonologist advised me to notify my next of kin. My twin sister was contacted. With my neck, armpits and groin flanked by cold packs in order to lower my intense fever, I waited nearly thirteen hours to be transferred up to the COVID isolation ward. I will never know if someone passed away or was stable enough for discharge, freeing up that private room for me.
I spent nearly six days in isolation on the standard Remdesivir/Dexamethasone regimen for the COVID and two very heavy “whole body” antibiotics for the pneumonia along with Heparin and another blood thinner to prevent clotting. I spent much of the time sleeping, the lethargy was unavoidable. I barely ate, aside from a lack of appetite, everything tasted bland. I never fully lost my sense of spell or taste, they have been only diminished. The frequent bloody, oily, loose bowel movements never changed throughout. During the week in the COVID ward, I had three spectacular specialists as well as absolutely stellar nurses and technicians. I was disheartened to learn that none of the nurses or techs were specifically meant for the isolation unit—they were from all other areas of the hospital and were simply scheduled to the unit with no choice otherwise, nor were they paid any different than a typical shift elsewhere in the hospital. None-the-less, they maintained excellent bedside manner and care. They were always in full body, single use PPE, changed every single time they entered each sealed room. The unit was always at capacity.
I've never been so scared of death before. (In full disclosure, I have been suicidal in the past and none of those murky times are comparable to how I felt in this time, and even still today.)
After becoming more stable and finishing all of the intravenous therapies, I was discharged Saturday afternoon with forty-three pages of outpatient information, an inhaler, a steroid, an antibiotic, a codeine-infused cough medicine, and orders to see my PCP within a week to set up outpatient care. We set up a telemedicine appointment with him in days; he simply concurred with the instructions but did not seem to think more outpatient therapy was necessary at that moment.
The day after I was discharged, my twin arrived in town. She had booked a hotel near the apartment for a week. She drove ten hours Pennsylvania-to-Chicago intent on look after me, with limited daily contact. My roommate opted to stay in Milwaukee metro where he works rather than come home for the weekend as usual. She bought disposable tableware, a humidifier, a pulse oximeter, Musinex, Tylenol, and yogurt. She then spent the week cooking homemade soups at the hotel and dropping them off and some days going beyond and the kitchen and main bathroom. It was phenomenal. I felt wholly guilty that for the most part I had no energy, no voice, and spent most of the time firmly planted on the couch or sleeping. I really have no idea how I would have handled the week without her. She even preplanned to be quarantined for two weeks with her roommate when she returned to State College. She is the kindest sibling you could ever have.
A couple weeks went by with small improvements. Some days were better than others. Then around the end of the first week of November, I woke up in the middle of the night feeling almost as awful as I had the night I was rushed to the hospital. Everyday since has been a constant flux of the same symptoms I had initially as well as a few new ones: excess fatigue, headaches, uneven breathing, coughing fits, low-grade fever, triple-digit heart rate, slightly lower blood oxygen, lower back pain, joint pain, heart palpitations, little to no appetite, abdominal pain (likely acute pancreatitis), sweats, chills, weakness, more pronounced tremors, grinding/fracturing teeth, vomiting, profound brain-fog, heartburn, persistent bloody and oily diarrhea, PTSD and more. When I looked into all of it I discovered there’s a condition called Post-Acute COVID Syndrome and this was confirmed by my PCP. More information is coming out everyday, though as of now, I'be learned that this tends to affect younger, male patients who’ve had COVID infections. P-ACS can last for weeks to months with the top concerns of long-term lung, heart, and neurological damage. Reinfection and sudden death continue to loom all about.
My PCP referred me to Northwestern Medicine's comprehensive COVID rehabilitation program which will last through at least the end of January. It's a step I truly wish was taken weeks ago. I never know what each day is going to bring me.
Reentering the workforce is on hold, for now. All of this enduring tumult has seen me reach the end of my savings. I am no longer able to make the minimums on my credit cards, copays for specialist visits, rehabilitation, or pay the medical bills (what’s left after financial assistance programs have been applied). Yes, I could file bankruptcy, though it wouldn’t discharge many of the bills plus it would completely dismantle my good credit that I’ve worked years to build. Thus, I am here, swallowing my pride, accepting the humiliation, and asking you for your help. I know this year has been rough on everyone worldwide. I understand that asking for support during all of this is quite possibly insane, though I appreciate anything from kind words to sharing to chipping in. I hope this brings understanding to you.
Meanwhile, I’ve been listing a number of my higher end belongings; watches, antiques/collectables, et al., on various apps and sites in an attempt to bring in as much as I possibly can. Unfortunately, sales have proven passive and fickle.
I am hoping you support will allow me to continue to trudge through hell, garnering minimal burns.
Thank You for taking the time to read through all this. All my love to you, and yours.
Be Well! Mask Up! Socially Distance!
Remember: Just because vaccines are on the horizon, it does not mean the pandemic is over!
Sincerely,
Tristan
Allow me to chronicle all this from the very start, I will attempt to be as succinct as possible.
2020 began like any other year, only with hints of what was to come buried in world news.
In March, just as Illinois was seriously considering lock-downs, my employer took the opportunity to let me go (I was not the only one, there is a pattern to the apparent madness). A week or so later, we were under a statewide shutdown. Initially, I did not think much of it other than it was what we all needed to do for our fellow citizens and ourselves. That, and I had enough in savings to go at least six months plus a handful of credit cards to live minimally.
From day one, I always wore my mask, kept surfaces clean, and only visited the grocery store and pharmacy. All considered, I did everything right; no parties, no meet-ups, no unnecessary travel. I had good reason, too: I have Lupus SLE—compounding that with an (especially) unknown disease could wreak havoc on my body and quite possibly kill me.
As the weeks went on, I settled into a new routine. We all did. In late September, I started to notice that I was grinding my teeth more than usual, as well as a drastic change in the frequency and consistency of my restroom habits and blood coming from places it generally should not. Eventually, a filling from years prior fell off one of my front teeth and a day or so later, part of the tooth next to it literally crumbled. Alarmed, I spent the next day looking for an emergency dentist who accepted my new insurance (I lost the previous insurance with job loss) to repair them and settled on one who was in close proximity to me. I had never been to this office before and long story short: never, ever again. His ‘fixes’ fell out within hours and after official grievance with the powers that be, I have been fighting my insurance ever since. The rest of the details are for another day. Hopefully they will be properly, professionally repaired (along with some new fractures (this will come up later)) before the end of the year.
The new routine continued a few more weeks. I had not an inkling that my entire life was going to change forever as I fell asleep feeling perfectly fine on Sunday, October 18th.
Around 03:00, early Monday morning I awoke suddenly feeling as if the bedsheet was strangling me. I fought hard to get it off of me. I was drenched in sweat and boiling, yet the feeling of drowning endured. I threw myself off the bed onto the floor and struggled to position myself on my knees and elbows in effort to take a deep breath, something I fast realized was horrifyingly futile, and in that moment I knew exactly what it was. I crawled up the nightstand with my hands and made it to my feet. I staggered all over the condo attempting to pull things together in what felt like a drunken, breathless stupor. The brain fog was fully evident, then I found the thermometer and took my temperature: 104.5F--it was more likely that the fever and lack of oxygen was confusing me. Bracing myself against walls and furniture, I collected my medications, medical history file, socks & underwear, and my phone charger. I called 9-1-1 and alerted them that they would need to arrive prepared to transfer a likely COVID patient. My speech was forced and slurred, that’s when the coughing began and it was painful. With each fit, I thought I was going to seize, faint, or have a heart attack.
The hospital is less than two miles away, although the ambulance transfer felt like an eternity. The ER was already prepared with an isolation room and I was made to hold back the coughing while I was wheeled through the public areas and until the door to the private room was closed. It was in that brief time that I noticed just how much pain I was in: between a raging headache and extreme joint pain (primarily in my lower body), I soon began to vomit uncontrollably. In short order I was having my brain prodded through my nose. I was supplied high-flow oxygen due to my saturation rate slightly lower than 90%. The first rapid test came back negative. The second was inconclusive. I was told directly that the rapid tests are not as trustworthy as many may think. I had a CT as well as an x-ray of my chest which showed I was accumulating liquid in the lower lobes of my lungs. Given the sudden onset, the symptoms and signs; I was then diagnosed with both acute COVID and lower-lobe pneumonia. The on-call pulmonologist advised me to notify my next of kin. My twin sister was contacted. With my neck, armpits and groin flanked by cold packs in order to lower my intense fever, I waited nearly thirteen hours to be transferred up to the COVID isolation ward. I will never know if someone passed away or was stable enough for discharge, freeing up that private room for me.
I spent nearly six days in isolation on the standard Remdesivir/Dexamethasone regimen for the COVID and two very heavy “whole body” antibiotics for the pneumonia along with Heparin and another blood thinner to prevent clotting. I spent much of the time sleeping, the lethargy was unavoidable. I barely ate, aside from a lack of appetite, everything tasted bland. I never fully lost my sense of spell or taste, they have been only diminished. The frequent bloody, oily, loose bowel movements never changed throughout. During the week in the COVID ward, I had three spectacular specialists as well as absolutely stellar nurses and technicians. I was disheartened to learn that none of the nurses or techs were specifically meant for the isolation unit—they were from all other areas of the hospital and were simply scheduled to the unit with no choice otherwise, nor were they paid any different than a typical shift elsewhere in the hospital. None-the-less, they maintained excellent bedside manner and care. They were always in full body, single use PPE, changed every single time they entered each sealed room. The unit was always at capacity.
I've never been so scared of death before. (In full disclosure, I have been suicidal in the past and none of those murky times are comparable to how I felt in this time, and even still today.)
After becoming more stable and finishing all of the intravenous therapies, I was discharged Saturday afternoon with forty-three pages of outpatient information, an inhaler, a steroid, an antibiotic, a codeine-infused cough medicine, and orders to see my PCP within a week to set up outpatient care. We set up a telemedicine appointment with him in days; he simply concurred with the instructions but did not seem to think more outpatient therapy was necessary at that moment.
The day after I was discharged, my twin arrived in town. She had booked a hotel near the apartment for a week. She drove ten hours Pennsylvania-to-Chicago intent on look after me, with limited daily contact. My roommate opted to stay in Milwaukee metro where he works rather than come home for the weekend as usual. She bought disposable tableware, a humidifier, a pulse oximeter, Musinex, Tylenol, and yogurt. She then spent the week cooking homemade soups at the hotel and dropping them off and some days going beyond and the kitchen and main bathroom. It was phenomenal. I felt wholly guilty that for the most part I had no energy, no voice, and spent most of the time firmly planted on the couch or sleeping. I really have no idea how I would have handled the week without her. She even preplanned to be quarantined for two weeks with her roommate when she returned to State College. She is the kindest sibling you could ever have.
A couple weeks went by with small improvements. Some days were better than others. Then around the end of the first week of November, I woke up in the middle of the night feeling almost as awful as I had the night I was rushed to the hospital. Everyday since has been a constant flux of the same symptoms I had initially as well as a few new ones: excess fatigue, headaches, uneven breathing, coughing fits, low-grade fever, triple-digit heart rate, slightly lower blood oxygen, lower back pain, joint pain, heart palpitations, little to no appetite, abdominal pain (likely acute pancreatitis), sweats, chills, weakness, more pronounced tremors, grinding/fracturing teeth, vomiting, profound brain-fog, heartburn, persistent bloody and oily diarrhea, PTSD and more. When I looked into all of it I discovered there’s a condition called Post-Acute COVID Syndrome and this was confirmed by my PCP. More information is coming out everyday, though as of now, I'be learned that this tends to affect younger, male patients who’ve had COVID infections. P-ACS can last for weeks to months with the top concerns of long-term lung, heart, and neurological damage. Reinfection and sudden death continue to loom all about.
My PCP referred me to Northwestern Medicine's comprehensive COVID rehabilitation program which will last through at least the end of January. It's a step I truly wish was taken weeks ago. I never know what each day is going to bring me.
Reentering the workforce is on hold, for now. All of this enduring tumult has seen me reach the end of my savings. I am no longer able to make the minimums on my credit cards, copays for specialist visits, rehabilitation, or pay the medical bills (what’s left after financial assistance programs have been applied). Yes, I could file bankruptcy, though it wouldn’t discharge many of the bills plus it would completely dismantle my good credit that I’ve worked years to build. Thus, I am here, swallowing my pride, accepting the humiliation, and asking you for your help. I know this year has been rough on everyone worldwide. I understand that asking for support during all of this is quite possibly insane, though I appreciate anything from kind words to sharing to chipping in. I hope this brings understanding to you.
Meanwhile, I’ve been listing a number of my higher end belongings; watches, antiques/collectables, et al., on various apps and sites in an attempt to bring in as much as I possibly can. Unfortunately, sales have proven passive and fickle.
I am hoping you support will allow me to continue to trudge through hell, garnering minimal burns.
Thank You for taking the time to read through all this. All my love to you, and yours.
Be Well! Mask Up! Socially Distance!
Remember: Just because vaccines are on the horizon, it does not mean the pandemic is over!
Sincerely,
Tristan
Organizer
Tristan Spencer DeWolfe
Organizer
Oak Lawn, IL