Pullen All Nighters

Beautiful milestone: It's been six months since I was discharged from the COVID ICU. For many friends and family, I've been the token "this is real and happened to someone I know" person. I'm happy to have shared my experience, and think it's equally important to share what's happened since I returned home.

My provider has said multiple times, "I'm glad you are doing so well, most of my COVID patients are not..." I've been so focused on getting back to normal life, that I hadn't even thought of any other outcome. It's sobering.

I'll start with the good news: I have a broader life perspective. The experience showed my driven, type A personality what really matters and what's worth getting worked up about. We are given a certain number of heartbeats. It's important to spend them on things that bring and provide joy to yourself and those you love.

And, a quick soapbox moment: I understand that COVID has a low mortality rate for young and healthy people. But if you choose to decline the vaccine, unless you are staying at home 24/7, you are risking your family and other folks who aren't so young and healthy. And importantly, even if those folks don't die, COVID creates long-term physical changes. Believe me, it's not worth the risk!

My COVID update - six months later

My lungs now limit me from certain activities. Sure, I had no plans to run a marathon, but I am sad that it's no longer an option. I'll just have to plan to walk the marathon.
I've had two spring/summertime colds and both ended up as a mild case of walking pneumonia, with one turning into ear infections and an eye infection. Changes to my immune system and lung function mean every cold now can cause pneumonia. I have no associated lung/chest pain, so other than a fever, I don't know when this is happening and seems to surprise me every time. I now *must* slow down when I have a cold and rest.
Clinicians find my case fascinating. I saw an urgent care doc for my last chest infection in June who couldn't believe I wasn't intubated as soon as I got to the ICU. He asked me questions for 5 minutes straight and all I could tell him was, "I didn't feel sick, I was walking around, asking questions and making jokes, so I guess they were waiting to see what would happen." I'm grateful I was an anomaly. Maybe my super power is resilience.
I'm still building back endurance. Having less than half lung capacity for a 2-3 months took a significant toll on my body. When I first got home, Richard helped me walk through the house. I had a cozy chair brought into the bedroom and stayed there for a week, as prescribed. I started by walking to the kitchen once a day, then around the house, then up the stairs. I'm now walking 2-3 miles per day, and this took a good bit of work!
In the last few weeks, I've found that I no longer have to remind myself to breathe deeply. My pulse ox is now around 94 when I'm not active and breathing normally. (When I focus on breathing, I can get it higher, but that's no longer the normal state.)
My heart rate spikes with any significant activity. Not fun and doesn't seem to be burning any additional calories. :)
I've cried. A LOT. Part of this was because I was on powered-up steroids and they didn't taper them down. Hello, cold turkey.

Candidly, I have significant PTSD from waiting on/watching for my vitals to crash in the hospital. I am still sorting through the emotional aspects of that and still have nightmares. A lovely lady I look up to at work, who also happens to be a nurse executive who spent her adult life caring for all types of folks, told me, "people do what they have to do to get through trauma while in the hospital, the real effects start to show up when they get home." So true.
Interestingly, my care team didn't tell me all the details of my admission. Maybe they thought I knew? Perhaps they were trying to focus on the positive? I pieced all of this together late into my stay, and then when the care summaries and bills arrived, and I saw ICD10 codes, care provided, etc. This triggered PTSD and survivor's guilt in a big way.

I didn't know I was in the ICU until 4 days in. I truly thought I was on a normal COVID floor for "observation" in case things turned south. I should have asked, but it didn't feel like a possibility.
No one ever told me my diagnosis was late-stage acute respiratory failure. Yes, I should have known, but I didn't.
I didn't Google any tests or symptoms in the hospital. I think this was out of self-preservation. I did research everything once I got home. It was a painful realization of how close I was to bad outcomes.

Best,

Allison

I joke that I am just clinical enough to be dangerous. I know the the "holy moly - get to the hospital!" signs of COVID-19. Between being raised by a MD, MPH who taught us every clinical lesson imaginable to working in healthcare for 15+ years, I should have known when it was my turn to go. I was almost too late and will be forever thankful for a care team who shook sense into me.

But to be clear, nothing makes sense when you don't have enough oxygenated blood in your brain. And in hindsight, this was one of God's greatest provisions during my time in the ICU.

I began documenting my symptoms at onset, because I couldn't find a listing of what to expect and I find how it affects every person differently fascinating. I continued documenting at my family's encouragement, and then because so much was happening quickly that I needed to keep it straight in my own mind. Highlighted dates represent time spent in the COVID ER/ICU.

General takeaways:

I never felt sick enough to be in an ICU. I scoffed both times physicians told me to go to the ER.
I never had pain and I didn't fully grasp how sick I was at the time. The only pain reliver I took was Tylenol for body aches/fever. I focused on what I could see and tangibly see and feel: telemetry/EKG/neuro monitors, vitals, walking to the bathroom, watching snow.
Even though my care team actively prepared me for negative outcomes (vent... or death) it didn't fully click in my brain. While I was scared, and spent many nights terrified that the crash team would end up in my room, I was oddly at peace.
The outpouring of love of our friends and neighbors still makes me weepy.
Richard and I had some symptoms that are similar, but thankfully he started feeling better the same time I started experiencing breathing issues.
Neither Ella Kate nor Caroline experienced any symptoms, but both have the COVID antibodies that shows they had the virus more than 14 days ago.
I've learned that COVID teams get worried when patients present on days 9-11 with new symptoms. This tends to skew toward poor outcomes. I'm glad I didn't know this initially!

Timeline of symptoms, care plans and discussions:

Sunday, 11/15 –

General achiness, but pronounced muscle pain along back of neck/head and through shoulder blades
Tired and cranky
Mild headache
Thick, hard-to-swallow feeling overnight

Monday, 11/16 –

Low-grade fever/felt warm from the inside (maybe this is what hot flashes feel like?)
More achy – including legs and back
More pronounced headache, but can still function
Upset stomach early afternoon - continued for a week
Watery eyes and wanted to lay down and keep eyes closed
Tested for strep/COVID in late afternoon
Worked all day from home

Tuesday, 11/17 –

Strep negative – no COVID result
Continued achiness – especially in lower back and shoulder blades
Continued low-grade fever
Very slight cough began early morning
Uncomfortable/fitful sleep (Monday night/Tuesday morning
Skin hurting – including prickling sensation on legs when clothes touch them
Not as cranky, but kids are really testing my graciousness
Worked several hours from home, but not all day

Wednesday, 11/18 –

Friend with similar exposure tested positive
Took night-time medicine to ensure I slept well
Low-grade fever/still like I have an internal heater from inside my body
Woozy when standing (Richard seems to have an extreme case of this – mine is manageable because someone must walk dogs)
Headache/face pain
Skin tenderness has improved, but constant sweating/chills/chill bumps
Lost appetite, but can still smell/taste
Worked several hours from home, but not all day

Thursday 11/19 –

Fever, but a bit lower
General malaise and wanting to sleep
Started getting tired when walking from one room to another; chalked this up to having a fever for so long
Worked several hours from home, but not all day

Friday, 11/20

Worked a good bit of the day – joining meetings where possible to feel normal. Tired, but thought I was on the mend! Definitely could function more like myself.

Saturday, 11/21

Coughing when talking begins in earnest. Was difficult to have a conversation through the coughing. This alarmed my mother and dear friend, who both urged me to go to urgent care.
Chest started feeling tight, but not painful
No pain, other than from fever, which spiked again
With the coughing, started watching pulse ox closer, but levels were consistently around 95%

Sunday, 11/22 –

Richard's COVID test from 11/16 came back positive
Fever continues – climbed a bit higher at 101. This did make me nervous.
Pulse ox dropped a bit and I started to realize I needed to go to the doctor the next morning to have them listen to my chest
In a quiet room, could hear “crackling” when I breathed deeply
Breathing deeply caused a coughing spell. This should have been a clue, but at least I knew it was important to have someone listen to my lungs.

Monday, 11/23 –

Shortness of breath, chest “tightness” and sharp pinch when breathing deeply. Pinch wasn’t painful – just a reminder that something isn’t quite right.
Coughing when talking continues – not all the time – but it did limit my ability to have an actual conversation
Pulse ox unsteady and heart rate was elevated. In the morning, I saw a few 87-89% readings and realized I needed medical attention.
Went to walk-in clinic and shared pulse ox fears.
Had chest x-ray, which showed early signs of pneumonia
Had an albuterol breathing treatment in the hopes I responded well to opening my lungs. There was no improvement.
Care team recommended I go to the ER for further testing. Was not emergent, but they were clear I needed to be there for observation because cases not better in a week can deteriorate quickly.

At the Vanderbilt COVID ER:

Walked from parking garage to ER check-in. Presented tachy at 134 BPM with a 94% pulse ox.
Stressful check-in with nurse yelling that I couldn’t have visitors and that I needed a room STAT. (This proved to be overly dramatic at this point.)
Taken to COVID-specific triage for vitals, which were unsteady, but not critical. Since my COVID test from 11/16 never came in – they did a rapid swab.
Moved to COVID ER area – received IV Lactated Ringers for hydration and Tylenol for continued fever.
Hourly ambulatory tests to see how my body reacted to fluids
When sitting and focused on breathing deeply, I was still able to move oxygen at around 93%. The team was comfortable with this and I was sent home with strict instructions to sit, rest, drink and breathe deeply. Gave me warning signs for hypoxia. Recommended a telehealth visit if I felt any worsening symptoms. (The ER doc told me "I'd know" if I were getting in trouble with hypoxia. Apparently I didn't realize what this meant!)
While in the ER, my first COVID swab came back positive. My rapid swab taken 11/23 at the ER came back negative 20 minutes later.
I left Monday evening with an albuterol inhaler + spacer and an Rx for a Z-pack. They said that my chest x-rays presented more like a bacterial infection (which we were all excited about – since it can be treated with antibiotics). I celebrated like I had won the lottery, because COVID pneumonia has no cure!

Tuesday, 11/24 –

Slept most all day. Exhausted and started to feel more tightness in my chest.
Fever spiked again Tuesday evening to 101. Pulse ox dropped to high 80s and I started feeling groggy. This was when I knew something was wrong and I was taking a not-so-great turn. In hindsight – should have gone to the ER at this point. I was still holding out hope that the Z-pack would kick in before Thanksgiving.
Scheduled telehealth appointment for early Monday morning.
Intuitively, I knew I was going back to the hospital. I cried a lot on Tuesday night.

Wednesday, 11/25 –

Pulse ox was lower around 86-88%. Felt foggy and slow.
No pain, but I did start to feel extreme tightness/pinching when breathing deeply. And I felt the need to gasp for air, which pinched and created anxiety. This was a not-great cycle.
Telehealth physician was excellent. I shared I didn’t want to go to the ER again and “get in the way of sicker patients.” She looked at me and made sure I understood that there wouldn’t be any sicker patient there than I was at that moment. Was advised to go to the ER immediately.
I needed stop use the restroom on the way to the ER and ended up stopping at the McDonald’s in Green Hills. I realized I was too weak to walk in and open the restaurant door and had the understanding that my situation was escalating.

At the Vanderbilt COVID ER/ICU:

I presented at the ER tachy at 139 and 87% pulse ox - hypoxic. Sitting in the triage area, the stats didn’t stabilize.
I was transported back to the COVID ER, in a wheelchair this time because I couldn't walk on my own without gasping. I received fluids and immediate O2 to stabilize.
Chest x-ray via portable machine showed pneumonia had spread really quickly – and obviously wasn’t bacterial.
Was assigned a room (7746) on a newly expanded COVID ICU floor. No roommate and I had a window!
Had a CT scan to check for pulmonary embolism (none found) – the results did show that I had only 40-50% of lung capacity and I was in “late/end stage respiratory failure.” Nothing could have prepared me for that diagnosis. (Except maybe the fact that I couldn't hold my breath in the CT without coughing like a maniac.)
Began daily Lovenox, 6mg dexamethasone and supplemental oxygen
Around sundown, I began hearing codes on the floor, followed by running footsteps. I had to leave some ambient sound in my room to cover this noise. From this point on, every twinge I felt sparked fear that they were rushing into my room.

Thursday, 11/26 –

As my lungs struggled my heart was working overtime to compensate with high pulse and HARD beats.
Began Remdesirvir (5-day course)
Continued O2 supplement – anywhere from 2-10 liters depending on need
At morning rounds, physician shared CT results, diminished morning lung sounds and tried to impress the severity of my prognosis. I still had no “pain” and didn’t realize I was entering a dire situation. He told me that my condition was “touch and go” and that he’d seen more cases turn toward poor outcomes than good outcomes. He tried hard not to scare me, but looking back I now realize he wanted me to understand that I was in real trouble.
Dr. said that we would talk about the day and the next 8 hours whenever he saw me. We’d focus on what we could do *now* versus anything more in the future. I’m thankful I didn’t recognize what that meant.
I completed living directives for them to ensure they’d take measures to run a code if I crashed.
My care team offered clergy visits and encouraged me to make phone calls to get affairs in order.

Friday, 11/27 -

Fever remained at 101.x
Seizures/syncope began during 4am vitals checks/blood draws. The care team explained my body was “borrowing” energy from other systems to continue fighting. Pulmonary borrowed from cardiac, which then began borrowing from neuro.
Lung sounds continued diminishing, but at a slower rate than was expected.
Continued O2 supplement – more liters following seizures/syncope. The most I was on was 11 liters at one point.

Saturday, 11/28 –

Seizures/syncope continued during the 4am vitals checks. I was never out for more than a minute, but had several episodes. Care team worried this was a signal that my other systems were beginning to shut down. I knew what this meant, but have to admit that I liked how "relaxed" I felt after an episode.
HARD heart palpitations through Saturday with a resting heart rate continuing in the 130s.
My body seemingly forgot *how to swallow.* I could chew, but couldn’t seem to get food ready to swallow. Care team decided this was part of the neuro symptoms and did not change care plan or medications.
Started proning to encourage lung clearing

Sunday, 11/29 –

Turning point! At morning assessment, physician heard clearer breath sounds and said it was “encouraging.”
Fever broke – temperature fell back into the 98 and 97.x range
Still had trouble swallowing, but focused on eating, drinking and sleeping. I started asking for jello, fruits and vegetables I could swallow more easily.

Monday, 11/30 –

No fever and my pulse dropped to a more appropriate level
Pulse ox began to stabilize – began practicing breathing room oxygen
Breath sounds clearer
Last dose of IV Remdesivir
Could eat again!

Tuesday, 12/1 –

Discharge to home health!
Continued isolation through Friday night (for my family’s protection, but also for mine)

Wednesday, 12/2 – Tuesday, 12/8

Begin slow and steady progress. Focus on resting, eating and staying hydrated to give my body a chance to heal as much as possible.
My recovery timeline is fluid. We're assessing damage and will take steps to continue healing my systems in both the mid and long-term.
My chest x-ray one week after discharge didn't show much improvement, but we are hoping that it will continue improving with rest and fluids.