The Day I Almost Died

Three weeks ago I almost died.  Not figuratively.  Not metaphorically.  Literally.  I LITERALLY almost died 3 weeks ago...and I am still trying to figure out what to do with the emotions I've been experiencing ever since it happened...

Wow...where to even begin...I've been trying to write this blog for almost 3 weeks, but something very strange and unfamiliar has been happening to me each time I sit down and work on it...I'm at a loss for words.  This is not an experience that is even slightly familiar to me because I am NEVER at a loss for words.  Never. Ever.  

Most of us, unfortunately, know what it feels like to see someone we love become ill or pass away.  But, rarely does anyone ever have the experience of feeling their own impending death.  It's an experience I wish I hadn't had.  And I'm discovering that it has rocked me to my core.  I'm not really sure what to do with the feelings, emotions, fears, and thoughts I've had over these past 3 weeks...A lot of my memories of that night are blurry.  Parts are missing, I have lapses in time, and I've also discovered that many of my memories of that night are mirrored.  I have asked my family about the details of that night, and am learning of more and more things I thought were reality, but in fact, are not exactly as I recall them...

I woke up on Thursday, February 29th, and I felt a little blah, had a bit of a headache, but nothing horrible.  I thought it was just the post-exertional malaise (PEM) from a really fun, but busy previous week and weekend.  This is not something out of the ordinary for someone with Long Covid so I didn't think much of it.  However, I woke up at 5:40 A.M. Friday morning absolutely freezing.  I covered up with an extra blanket and burrowed under the covers.  When my husband woke up at 6:30, he took my temperature and it was high, 103.4. I had planned to go out of town with him for an appointment, but stayed home to try to sleep off my headache and fever instead.  

I finally drug myself out of bed around 12:30, took some ibuprofen, and settled into the recliner for the rest of the afternoon.  My headache and fever were both gone by 2:00, and I felt decent other than some body aches.  I was sure I must be coming down with the flu.  I took it easy the rest of the day, and even had a couple of hours where I felt relatively "fine".  Then, around midnight, when I was about to head to bed, I got a bit chilled.  I covered up with a blanket, asked my husband for another blanket and some ibuprofen, and decided to just wait it out before going to bed.  That's when things got ugly.

My husband went to hang up some laundry and my daughter headed off to bed.  I stayed in the living room, in my recliner, alone.  That's when I began shaking uncontrollably.  My teeth were clanging together, I was unable to sit still in my chair, and the shivering grew more and more intense.  I know now that what I was experiencing was rigors, which was an indication of worse things to come.  

My husband came out to see if I was ready for bed and found me in that state.    My breathing was becoming more difficult, and I was becoming more and more light-headed.

I began repeating, "Help me!" over and over as the rigors became more intense, but my husband couldn't hear and/or understand me.  My daughter came out of her room and asked if I was having a seizure.  She is the one who noticed the backs of my arms were blue.  My husband then saw this and noticed my face, especially around my nose and mouth also becoming a purplish gray.  They both told me I needed to go to the ER, and I told them I couldn't.  At that point, I knew I could not walk as far as the front door, let alone get into a vehicle and ride across town in that condition.  They then said they were going to have to call 911, and I said OK.  I had no idea what was wrong with me, but I knew that I needed help.  Immediate help.  

The next few hours are a blur for me.  I know when the EMTs arrived I was in very critical condition.  My blood pressure and oxygen were dangerously low.  My temperature and pulse were dangerously high.  I know they worked on me in the ambulance for 10 minutes before getting into place for the ride to the hospital.  I know I was given a breathing treatment.  I know I was put on 5 Liters of oxygen.  I learned that when they took my temperature at the hospital it was 105.3 degrees Fahrenheit.  I know my lactic acid was elevated.  I know my kidneys were in acute distress.  I was diagnosed with Septic Shock.   

When it was safe to transport me, once my vitals were in a safer range, I was taken to Lincoln where I spent the next two and a half days receiving IV antibiotics, Heparin shots in my stomach, and had labs run multiple times a day.  I was prescribed oral antibiotics to continue at home.  My bloodwork was inconclusive as to what caused my body to go into Septic Shock, so the doctors' theory is that I contracted a virus of some sort, unknown at this time, that caused the entire series of events to quickly unfold.

The unknown is scary.  The fact that I am now more susceptible to getting Sepsis is scary.  Having chunks of time I cannot remember and learning that. things I thought I did remember did not happen the way I picture them is scary.  But the scariest part of all of this are the after-effects that I had not expected to happen.  I had no idea...

Since being discharged from the hospital and being back at home, something is different with me.  Yes, there is the fact that I'm still not feeling well, haven't gotten back to my baseline yet.  But it's more than that.  Emotionally, that's where my struggle is, and I don't really know how to explain it...I am withdrawn, feel very hyper-sensitive and over-stimulated.  I startle more easily.  Some days I want to sleep 12 hours and some days I don't want to sleep at all.  I can feel myself getting annoyed quickly, agitated, less tolerant of others.  I feel very emotional, cry at the drop of a hat...I feel vulnerable, exposed, and very alone and unable to be understood by others because I don't know how to really put into words quite what these feelings are.   

I've been dealing with Long Covid, the loss of my career and life as I know it for 2 years now.  And it's so, so hard...but this is different.  This was fast and unexpected and unavoidable, and it almost took my life in a matter of minutes...and I don't know if these feelings I'm experiencing are common or "normal" for people who have come close to dying or if it's just me...but it's been a rough 3 weeks, to say the least...

People Suck and Other Revelations...

I began this blog (and wrote the title of this blog) October 30th, and now, today, December 10th, I am just now coming back to it.  My therapist has been waiting patiently for me to finish and post this blog, and I have tried several times, but just couldn't figure out exactly what I needed to say.  It was all in my head, but getting it out into words is something I've been struggling with...But, as I sit here at 4:30 A.M., still dark outside, my cats roaming around trying to figure out why I'm up to interrupt their shenanigans, and my dog still sleeping soundly in our room (along with my husband), I'm attempting this blog again...

Last night as I scrolled through Facebook, I came across an ad for Madonna Rehabilitation Long Covid Clinic.  I liked and shared it because I not only attended the Madonna Long Covid Clinic for 3 months, but still utilize their services as well.  After sharing the ad, I noticed several laughing emoji reactions on the original post (not mine), and I saw that 19 people had reacted in that way.  I then began reading the comments people were posting on the Madonna Long Covid Clinic page and became instantly emotional.  Words like "psychosomatic symptoms" and  "placebo effect" and "another fibromyalgia" along with conspiracy theories about the harmful lasting effects of vaccinations flooded the comments.  

I know I need to learn to ignore these types of things, but it's just hard sometimes.  When something has completely taken your previous way of life from you, how do you just let things like that slide off your back?  What I also wish I could ask each of those people mocking Long Covid is how they explain how the estimated 9 million people in the U.S. alone, and an estimated 65 million people around the world who have been diagnosed with symptoms of Long Covid if it's just something made up in our heads.  I would ask them to explain how we all just happened to have gone from perfectly healthy, active people living our best lives to being suddenly so debilitatingly ill that our careers, family life, social life, and physical well-being have been completely destroyed.  How do we all just KNOW what symptoms to describe that replicate the symptoms of others who are also experiencing them?  There's no other explanation for it.  Long Covid is real and it's an ugly, cruel illness that even the most renowned medical experts are still struggling to figure out.  Though many people do not have any abnormal test results, others of us do, and these clearly cannot be "faked" or "made up". 

Though many people with Long Covid will go through a battery of tests with no definitive answers to their symptoms, I personally have had an MRI that showed some areas of white matter on specific areas of my brain that are advanced for my age.  This would explain the split of over 40 points on my psychological evaluation between my attention/concentration/working memory and other areas of my cognitive brain function. For those who do not know exactly what those types of scores mean, when there is a large "gap" or split between scores, it means different functions of the brain are basically working at different paces or capacities which can make some aspects of my cognitive world really difficult.  

A fact I don't think most people outside of the Long Covid world realize is that those who have cognitive and psychological issues associated with Long Covid present very similarly to people who have suffered a traumatic brain injury (TBI), therefore, behavioral cognitive therapy is used in much the same way for Long Covid patients and TBI patients.  There are physical brain symptoms (such as advanced white matter, micro clots, etc.) that can contribute to these similarities, but there is also the psychological trauma that also plays a large part in those similarities.  Having an illness, whether mild in nature or so severe hospitalization was necessary, which results in major life changes, causes a lot of psychological trauma leading to anxiety, depression, and cognitive function deficiencies.  Many symptoms may also present closely with post-traumatic stress disorder (PTSD).  A sudden medical event that impacts every aspect of your life is traumatic, and dealing with the sudden and unexpected repercussions of that can be devastating...traumatic. 

Something I have really noticed regarding memory is that I can name off almost every student I had from the start of my career in 2001 to the end of the 20/21 school year.  However, I have a very difficult time coming up with the names of the students I had during my final year of teaching, (the 21/22 school year) which was the year I got Covid and began having Long Covid symptoms.  I recognize their faces, but I cannot come up with their names.  It's horribly frustrating and makes me feel so guilty too. 

Another thing that has been really difficult for me is word-finding.  I know it appears that I have no problem with that when reading my blogs, texts, etc.  However, the part no one outside of my immediate family sees is the amount of time I use googling "words that mean_______" or "synonyms of_______" because I just cannot find the exact word I'm looking for.  I can tell you what it is similar to, what its definition is, and how I want to use it in my sentence, but the word itself is just GONE.  I also have begun having another odd issue come up.  When writing/typing, I will often use the wrong form of a word, even when I'm picturing the word in my head correctly.  (And yes, since dealing with these cognitive changes, I have discovered that when I am writing/typing, I visualize the words as I'm typing/writing them, which I did not realize I had done until all of these new changes came about.). For example, I may mean "their", I'm picturing "t-h-e-i-r", but I type "t-h-e-r-e" and have to delete and retype it.  Or, I am trying to say "meet" and I type "meat".  The examples go on and on.  I do it with most homophones on a daily basis. It's as though my brain and my hands aren't communicating correctly.  I hate it too, because, as an English teacher and proud "wordsmith" by my own recognition, making those types of errors, and KNOWING the correct use of these words, is incredibly frustrating, especially when I don't catch the errors until after I've hit "send". 

Though this blog ended up going in a different direction than I'd intended when I started it 6 weeks ago, I finally finished it.  There is just so much I wish people understood, so much I wish even I understood about the changes that have occurred over these past 2 years.  But, maybe someone reading this will be able to relate, maybe they will realize they aren't quite so alone, and maybe it will help them to feel a little less isolated in their own battle.  If that is the case, then I've done what I have hoped and intended to do with my blog.

If any of you have a true interest in understanding Long Covid, want to learn more, or would like to find support for your own symptoms or show support for a loved one with Long Covid, I encourage you to join a Facebook Long Covid group.  A good, legit group I would recommend is: https://www.facebook.com/groups/COVID19survivorcorps/

'Til next time...

New Blog, Old Issue: Bias in Healthcare

I wrote a blog a few months back called "Overweight and Out of Shape".  After writing that blog I began doing some research on bias in healthcare, and the information I found was pretty astounding.  Bias against patients who are overweight is clearly an issue, but there is bias against women, against men, against people of color.  These biases are real issues in our healthcare system, and it's something we all need to speak out about.  We need to advocate for not only ourselves, but our fellow patients who also need to have fair, unbiased treatment.  

I recently developed a serious infection in my leg, one that could have quickly turned into a life-threatening situation had I not gone to the ER when I did.  I have severe edema in my legs, edema that has developed into lymphedema over the course of the past 2 years.  With this comes complications; one being severe skin rashes that can break open and weep lymphatic fluid.  These open wounds are ideal breeding grounds for bacteria.  Despite my best efforts, I developed cellulitis in my left leg because of this weeping wound.  

The frustrating part of this ordeal is that I contacted my cardiac P.A. a week prior to my ER visit.  I explained that my edema was at its worst, that despite taking my prescribed diuretics in the variety of combinations and dosing options we'd tried, I was more swollen than ever, that the weeping wounds on my leg were getting worse instead of better.  Her response was to make an appointment with one of two cardiologists within her practice who I'd seen previously, or to see the nutritionist.  

And there began my "bias in healthcare" dilemma.  

Cardiologist #1 had spoken to me like I was an idiot.  He was convinced I was diabetic and that my edema was because I was in active heart failure.  (Blood tests proved otherwise an hour later, but I got no apology or even acknowledgment of his errors in his assumptions.)  The next day, while consulting with me after my double heart catheterization, when I told him we had been able to get me down to "x amount" pounds of fluid off 4 months previously with heavy dose diuretics, but it all came right back, he accused me of being delusional, insisting I was claiming to have 90 pounds of fluid, which was absolutely ridiculous.  I told him no, it was only 40 pounds of excess fluid.  He vehemently insisted I weighed 50 pounds more than I did.  After my insistence, he pulled out his phone, pulled up my chart, saw that the weight I told him was correct, and ended the conversation by just leaving my hospital room.

Cardiologist #2 was very dismissive.  When I expressed concern over my edema not going down despite diuretics, his response was that everyone is made of 75% water.  Yes, but not everyone is carrying it around in their legs and abdomen to the point of having serious mobility issues...

Next, I saw a nutritionist.  She set me up with a program to log everything I ate, to track calories, fat, carbs, sodium, protein, specific vitamins, etc.  These were all things I'd been doing for the past 14 years using another popular free calorie-counting app, but I was compliant, did exactly what she'd asked of me.  The booklet she provided said, "Log without judgment" so that's what I did.  I logged absolutely every bite I took.  If I had a day of emotional eating and indulged in 4 Swiss cake rolls, I logged it because I knew there was no use in being dishonest.  That wasn't going to help HER help ME.  When I went to my next appointment, we went over my food logs, I told her I was brutally honest about everything, even on days I didn't want to be.  She commended me for that.  However, when I got home and read her notes from the visit on my online chart, she wrote that I was consuming anywhere from 4,000 to 6,000 calories a day on days that I gave in to emotional eating.  This was absolutely untrue.  My highest day ever had been 3996, and I was completely honest with her about that day, what I ate, and what events had caused me to turn to emotional eating that day.  I felt as though she didn't believe me, and was putting her presumptions in my notes even though I'd been completely honest with her despite my hesitation.  I felt a complete lack of trust in her and in the program, so I canceled my next appointment, and have not scheduled any upcoming appointments either. 

When looking further into bias in healthcare, I came across so many posts, blogs, and articles about a variety of biases people encounter every day.  I found stories about women of color being told they were predisposed to certain health conditions without actually investigating the specific symptoms they were there to address.  Others were dismissed as being menopausal rather than testing for other possible causes of symptoms.  Stress was also blamed for many patient complaints, rather than looking into other reasons patients had specific symptoms.  Many articles and personal anecdotes discussed that their stress and anxiety were caused BECAUSE OF their symptoms and lack of support from their providers rather than their symptoms being a result of stress and anxiety.  And then, of course, there was the weight bias.  Rather than acknowledging that patients of average weight often have the same health issues or ailments that overweight patients have, if a patient is overweight, the common response from providers is to suggest weight loss as a remedy to their symptoms.  

Research on the impact of obesity bias in healthcare shows an elevated risk of psychological reactions such as eating disorders, unhealthy behaviors, anxiety, and depression which can negatively affect major vital signs.  This bias also leads to resistance in seeking medical care and a lack of trust in healthcare providers, resulting in insufficient treatment for patient health and well-being.

As I stated in my original blog on this topic, I can't deny being overweight, and I'm certainly no athlete.  But you know what else?  I was "overweight and out of shape" when I graduated high school in 1992, when I took a 10-mile walking tour of D.C. in 2009, and the summer of 2021 when I was living my best life.  I was "overweight and out of shape" when I was feeling ill in November 2021, and in December 2021, and still in February 2022, when I was officially diagnosed with Long Covid.  

But, is that what's "wrong" with me?  No.  Is this "overweight and out of shape" identity something I've only taken on since being home with Covid for those 3 weeks almost 2 years ago?  Nope, not accurate either.  Should ALL healthcare providers diagnose patients equally rather than conclusively basing treatment plans on physical appearance?  Absolutely, because last I checked, just being "overweight and out of shape" never stopped me from living my best life. 

But Long Covid, and all of the many physical, emotional, and neurological symptoms that go with it definitely have.

Those are the things that a conservative estimate of 65 million people around the world with Long Covid are begging to be given; providers who look at them as individual people with very real symptoms that are tied to a horrible disease none of us want to be living with, a disease that has nothing to do with race, gender, age, weight, or socioeconomic class.

Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21. 133-146 (2023). https://doi.org/10.1038/s4159-022-00846-2