This is a follow-up to my post describing the events that lead to me being admitted to the hospital with what turned out to be (amongst other things) a pulmonary embolism. There’s a tl;dr version near the top of that post, so I won’t repeat the abbreviated account here.

CW – ambulances, breathing issues, health issues, hospitals, blood and IVs.

Storytime: My Pulmonary Embolism, Part Two – The Diagnosificationing

This post picks up with me already admitted to the hospital, but with no diagnosis as to why I couldn’t breathe without oxygen, why just standing up left me trembling with exhaustion, or why my heart rate — once raised — stayed elevated for an hour at a time.

I really wanted to get diagnosed, get a pill that fixed the issue, and get home. But as the staff drew 6 vials of blood, hooked two different sets of wires to my chest (one for keepsies throughout my whole stay, one just for a specific set of tests, which they applied and removed three times during my stay), drew 4 more vials of blood, stuck an x-ray plat under me, drew 4 more vials of blood, listened to my chest, drew 2 more vials of blood, and shuffled which “machine that goes PING” they had in with me at any one time, it became clear I wasn’t going home that night.

Eventually, a doctor confirmed it. Their then-best guess was severe pneumonia, with its stress and overexertion leading to tachycardia and arrhythmia… which is just a fancy way of saying “You’re sick, you were dumb, and your heart freaked out.”

And, to be fair, it turned out I DID have pneumonia. And was suddenly anemic. But those were just frosting, not the true Bad Health Cake.

So that night, they finally admitted me to the hospital. I had to wait from a Bariatric Bed to be available (fancy term of “partially inflatable fat-person crib”), did one final set of ER-based injections into my I.V., and took me up an elevator.

Oh, lord, the I.V. You know, I’m going to take a quick aside to talk about my I.V.

I have tiny little fuckers for veins. They hide, dodge, dry out, and are generally difficult for phlebotomists to deal with. When I was in the ambulance the paramedics tried to get an IV in my left hand… and gave up. Then they successfully started one on my right hand… and it stopped working while they were hooking up a bag. So they decided to try on my left arm, and (with a team effort) got one working.

That was the IV I had when I got into the ER, and within a few minutes, it stopped taking the fluids they were pumping into me. So the young nurse called the old nurse, and the old burse wiggled it, got it working again, and decided to tape it down more. We’ll that IV Mark 2.

Then they decided I needed multiple antibiotics, because my x-rays showed I had pneumonia… and the Mark 2 IV stopped taking in fluids. So the old nurse called a SNTTFST (Specialist Nurse Trusted To Fix Such Things), and he wiggled it, re-lay the tubing, used tiny shims of tape to keep it in just the right position, and then added more tape.

A LOT more tape. Like, a “this ductwork needs some tape” amount of tape.

We’ll call this IV Mark 3.

That survived until I got up to my actual hospital room, where a new set of injections has to be made directly into my IV and… it did not go. So the nurse wiggled it, and added some tape, and could flush it, and got my injections in through it. That was IV Mark IV, which I liked the sound of, and it lasted a full day.

But a little more than 24 hours later, my drip stopped feeding into my IV again… and the nursing staff was Not Having It.

So the Entire Nursing Staff On My Floor had a conference, held an exorcism, threatened by veins at gunpoint, and decided everything but the needle Had To Go. They reworked the entire tube looping, juggling, shimming, and taping process, and slapped a patch with a clear section right over the insertion point. I called this IV Mark V, also the Window of Horrors.

It lasted until I was discharged… but was visually gross. Below is a picture. You were warned.

(It’s not as comfortable as it looks. … Nope, even less comfortable than that.)

The only issue we ever had with the Window of Horrors was, once, a new nurse let the blood pressure cuff slide down halfway over it, and then turned on the machine to squeeze the hell out of my harm. And, in this case, the “Hell” that got squeezed out included a tiny stream of my blood, like a crimson water fountain for ticks.

Okay, enough of the aside.

My wife Lj had to go home to get the things we’d need for a stay of, we had been warned “a couple of days if it’s pneumonia, or up to a few weeks if it’s sepsis.” I got hooked into the wall-mounted oxygen, and a few banks of monitors checking my blood 02 levels, my heart rate, my respiratory rate, my blood pressure (originally set to take itself every two hours, eventually downgraded to a nurse doing it every four), my IV fluid intake, and I am sure a half-dozen other things I never know about.

For me, the main thing I hard to remember about the oxygen and monitors was, if I had to go pee, that required unhooking three sets of wired sensors, unplugging the rolling IV stand, and curling up enough oxygen hose to play out in the slow, daunting, exhausting, trip from the fat-cradle-bed 5 feet to the bathroom. It took planning, perseverance, and patience to go pee.

Lj wanted to stay in the room with me, but I saw the chairs they had in there, and began to tell her not to. An overnight in one of those not-padded-for-spit, kinda-reclines-but-not-really, hard-arms-that-dig-into-your-sides chairs would leave her back aching, her legs cramped, and her so sleeplessly tired she couldn’t safely drive. Trooper that she is, she refused to budge and insisted on staying.

Until about 3 am, when she had to go home before she was so pained she couldn’t. My wife is determined, not stupid.

The next 24 hours was hard on me, maybe the hardest of the whole time I was hospitalized. Lj got stuck at home trying to catch up on things left undone, and a thunderstorm, and other issues, and I told her not to come see me the next day because it was going to be too much for her. I cried a lot, because I couldn’t sleep (getting your blood drawn every four hours, and a nebulizer strapped to your face every 4 hours, and your blood sugar checked every four hours, but all by different people on different schedules, makes sleep tricky-at-best), and because no one could tell me what was wrong with me for sure, and nothing was getting better, and I was afraid this was what I had to look forward to for the rest of my life.

It was a dark place. The nurses noticed, and got me some anti-anxiety prescriptions, and that helped.

Thurs-Fri-Sat were better, though the longer I was stuck in the bariatric bed I was at war with, and went without a shower, the grumpier I got. But I finagled a better chair for Lj so when she did return, she could (and did) stay with me. And the diagnosis began to firm up. In addition to the pneumonia and the anemia, I almost certainly had a pulmonary embolism (that’s doctor-talk for “blood clot in your lungs choking you like an evil little chest-gremlin), which led to testing for and confirmation of a Deep Vein Thrombosis (doctor talk for “don’t sit in a chair for 12-14 hours straight each day or you’ll die”). Blood thinners were added. I began to be able to walk a bit.

Walking 35 feet while on oxygen before collapsing in a chair sweating like a Thousand Sons at a big Emperor of Mankind’s Birthday party may not sound like much, but it was a far cry from only being able to go 3-to-5 feet.

(Yes, that’s a 40k reference. I have a specific friend I snuck that in for.)

My doctor wanted to confirm my pulmonary embolism with a cat scan. … he wanted to, but couldn’t, because I was too fat to fit in any CAT scan they could get me to. But the proof of the clot in my leg, combined with the blood thinners showing improvement, finally convinced him to let me go home.

It was, as I noted at the time, victory in the tactical battle… but a strategic war remains to be fought. Pulmonary embolisms are serious, can be deadly, and this one nearly got me. And there are still unknowns — my lung x-ray suggested, inconclusively, possible lung scarring which would mean permanent lung capacity loss. I need physical therapy, occupational therapy, respiratory therapy, follow-ups with cardiologists and various other specialists. I have a serious bleeding issue that needs to get addressed, and it’s exacerbated by my being on blood thinners for at minimum the next 6 months.

I have to learn how to sleep again, learn how to sit again, learn how to moisturize my sinuses again (nothing with glycol or petroleum… but I finally found an option and I do NOT want to set my nose on fire), learn how to eat again (and not the way I’d expect — I need more iron, magnesium, and protein), and it still takes significant planning to pee. (Especially if I need to pee at night — I have to either unplug the oxygen from my CPAP and reattach its own nose-valve, or have the separate oxygen tank nearby so I can swap from CPAP to tank…)

Doctor’s visits every couple of weeks, maybe for months. Bruising at the drop of a hat, maybe forever. Laying down every few hours to elevate my legs, BUT standing every hour to move them around. And every time my breath runs even a little short, I have to fight a wave of panic. The long stretches where my heart pounded for hours, and my lungs were on fire, and my brain was screaming that I was going to die with silent, gasping screams my final act on this Earth… they have left a mark on me.

Even if I was at full health, it’d be exhausting. But I’m not. I can sit totally calm without oxygen, but need it to do anything or stand and go anywhere. My reserves do not exist. If I do too much at 10 am, I’m still feeling it at 10 pm. Focusing on anything is tough, and thinking (or writing, which I admit does not always involve me bothering to think) tires me at a frightening speed.

I’m alive, but my life is radically changed. My capacity is reduced drastically. Maybe this is just-for-now. Maybe it’s forever. Most likely, it’s somewhere in the middle.

As my journey goes forward and evolves, and I figure out what I am doing about my career, my place in this industry, my total-lack-of-retirement-options, and my current health challenges (especially how they relate to this blog and outstanding projects of mine), I’ll let you all know.

Methods of Support
So, a lot of people have offered a lot of support, and I deeply, deeply appreciate it. There are plans moving forward to try to help cover medical bills and loss of income, and when they’re ready, I’ll announce them here. I may end up needing to turn to extraordinary measures, such as a GoFundMe, but I won’t be doing that until I know for certain I have to.

However, if you DO want to offer immediate support, I won’t refuse it. You can join or increase your membership tier at my Patreon, or if you prefer do one-time support through my Ko-Fi.

Thanks, folks.

Owen

Hey folks. You may have noticed that I haven’t posted to my blog much for the past week, and there’s a pretty compelling reason for that.

CW – ambulances, breathing issues, health issues, hospitals, and frank discussions of how fat people are treated by some healthcare professionals.

I was hospitalized with a pulmonary embolism. It wasn’t fun.

(This is me on Feb 16th…not having fun.)

For the tl;dr crowd: I was taken to the hospital last Tuesday (2/14/2023) with a blood clot in my lungs, kept there until Saturday, and am home now but still extremely week. I’ll need weeks, maybe months, to fully recover, and it could all happen again without warning.

Okay, that’s the extremely short version. Now, it’s storytime.

Storytime: My Pulmonary Embolism, Part One – You Should Go To The ER

I’ve been having health issues since 2014. In fact, I’ve gone to the ER once a year on average since December 2014, and have been suffering some infection or other literally 25% of my life for the past 8 years. A lot of that was colds, but I have also had pneumonia 4 times, bronchitis twice (once concurrently with the pneumonia), the flu 6 times (yes, despite getting a flu shot every year), the super-generic sounding “upper reparatory infection” five times, had long periods (weeks or months at a time) where I suffered apparently random sudden-onset fatigue that could shut me down as if someone had flipped a switch in my brain to make me unable to think to do anything except fall asleep… and had staph infections. A LOT of staph infections, involving more than half those ER trips I mentioned, and hospitalizing me once in 2019.

In short I have become, as a dear friend noted to me shortly before the pandemic, fragile.

The early days of the pandemic were actually a break of health for me, for about 4 months. I got more done, had more energy, and was never sick. But by the end of 2020, I was exhausted all the time, often with no explanation, back to getting pneumonia and staph infections, and often had trouble focusing on tasks.

So when I got a bad cold last December (having dared to go outside my social bubble to see tiny groups of people in well-ventilated areas, like my in-town family), and that turned into a bacterial lung infection, and that turned into pneumonia that took two courses of antibiotics and a course of steroids to get rid of the worst symptoms, I was not surprised. And when that left me with extremely low endurance, I chalked it up to being a morbidly obese man in my 50s who had been sick for six weeks. I mean, that pneumonia had been so bad my doctor had told me if I ended up having trouble breathing, “you should go to the ER.”

Sure, walking across a room left me slightly short of breath, but that was something I could fix (as I always had) over time. I wasn’t “having trouble breathing,” right? Just getting winded easily. I’d recover my endurance.

But oh, no. Not this time.

Unbeknownst to me, I have developed Deep Vein Thrombosis in my right thigh. This is a fancy way of saying I had a blood clot. And a bit of that blood clot had broken off from the mothership, moved to my lung, and begun reducing oxygen flow to my heart.

This is bad.

But I still had no idea what was going on. So I struggled along for another week and a half… and things got worse. I went from being slightly winded if I crossed a room to beginning to wheeze the moment I stood up. This freaked me out, and I made an appointment to see my doctor, and got some bloodwork done. I mean, I could breathe, so the ER wasn’t necessary. Maybe just one more round of antibiotics, and my doctor would need to see my lab results to know what to try this time.

I ran a game on Saturday the 11th, despite being unable to walk more than 5 feet at a time. I had to bow out of playing in a game on the 12th. I cried about how weak and tired I was on the 13th, and had to plan any moment requiring me to stand very, very carefully.

So, yes, something was obviously very, very wrong. And, equally obviously, I should have gone to the ER. And I didn’t. And there are multiple reasons for that, ranging from the expense (even with the insurance I scrimp and scrape t pay for, an ER trip is a bit hit to my budget) to my CPTSD (I can get panic attacks in any circumstance where I don’t understand what is going to happen). But a big one is… I’m fat.

Very, very fat.

Fat people have problems with healthcare professionals. A lot of that can be mitigated by finding one who actually treats you like a person, but at an ER you don’t get to pick your doctor. I have been told at ERs that my fever was “normal” for someone my size when I actually had pneumonia. I’ve been told a staph infection was weight-related acne, shortly before I began vomiting from it. My rheumatoid arthritis has been dismissed as weight-related osteoarthritis with a glance and exactly 0 testing. And, many, many times I have been told by a doctor, without talking to me or looking at my records, that a given problem is a side-effect of uncontrolled diabetes.

…

It’s worth noting, as part of that story, that I’m not diabetic. Never have been.

…

So, yes, I needed to go to the ER for days, and just muddled along in pain, short of breath, and constantly exhausted rather than face dismissal, insult, and misdiagnosis yet again.

And that brings us to February 14th. Valentines Day. And boy, did I have a heart-shaped surprise coming.

I had trouble sleeping (no shock, I’m an incurable insomniac, even with my sleep apnea well-treated and managed), so I got up late. My wife Lj was, as she often does, taking up the slack in what needed to get done and was herself exhausted. Since I was up to deal with things like expected deliveries, she lay down for a nap. And I decided to freshen up with a shower.

Showering had been a chore for days, but I was determined to push through it. My breath got short, and my legs got weak, but I’m already nearly a shut-in thanks to the pandemic. I was determined not to be an invalid. No matter how much I gasped for breath, no matter how much my heart began to hammer, I forced myself to push through it. And when it was done, I sat down to catch my breath.

Minutes passed. I was still wheezing and my heart was still pounding. My vision was filling with spots. I nearly passed out.

“So, Owen, you finally went to the ER, right?”

Oh, no friends. No such thing.

No, I went and woke my wife and told her I couldn’t be the one to stay up to deal with things. I had to lie down. And, to be frank, she was pretty ticked about it. But she saw I was panting, thought I’d just done something requiring exertion despite being chronically short of breath and seeing a doctor about it the following week, and let me lay down. I strapped on my CPAP… and kept gasping for air.

I’m not sure I can accurately describe the nightmare that followed. Not only was my heart not calming down or my breathing easing, it was getting worse. My vision blurred. I waited. And waited. For 30 minutes. And then when I decided to call for help… I couldn’t. I could barely choke out words one at a time. Thankfully, we have a smart speaker system, and I used it to cough out a housewide cry for aid.

My wife heard, came and saw me, and asked if I needed to go to the ER. I finally said yes. So she started to get ready, and we discovered I couldn’t stand.

THAT is when we both started to get really frightened. I am slow. I tire quickly. I’m fragile. But I have always, always been able to get up on my feet and do the crucial thing when it mattered.

But not that day. Happy Valentine’s Day, honey. Call an ambulance.

The 911 call went well. Upon discovering I had some bleeding issues (another thing I was to discuss with the doctor a week later), the emergency operator made sure they *didn’t* give me the aspirin otherwise called for in this case. Eight firemen showed up, took my vitals and, to their eternal credit, never assumed anything about why I was unable to breathe and my heart was beating hard, fast, and unevenly. Then the paramedics showed up, took my blood oxygen, strapped an oxygen mask to my face, and it was immediately time for me to go to the ER.

The firemen rolled me back and forth to get two traps under me… and carried me out of the bedroom, around an immediate 90-degree corner, and out the front door. Now, I am a BIG guy. When I walk through a doorway, there’s no spare space. But somehow these 8 calendar-worthy men surrounded me, 3 to each side, one at my head and one at my feet, and walked me through doors I barely fit through by myself.

Which is not to say it was easy for them. They were carrying me out head first, when one of them noticed the gurney outside was set to receive me feet-first.

One panting fireman; “Hey, we’re bringing him out head first. Turn the gurney.”

One calm paramedic: “No, we’re set up feet first. Turn the patient.”

Eight panting firemen: “TURN THE GURNEY!”

They turned the gurney, and the firemen got me into the ambulance. My wife Lj was right behind them, sitting in our car.

For minutes. It took them a long time to consider me stable. The paramedics were monitoring my blood 02, my heart, my mental state… and had to decide which of the two Emergency Rooms in range was better qualified to handle me. Lj has to sit for long minutes, knowing I was in the ambulance, and for some reason it wasn’t moving yet.

But eventually, they made a call (the right one, to their credit, we’d work out days later once my issue was actually diagnosed), and I got my first ambulance ride.

Whee.

Residents of Norman, Oklahoma may recall there was a high wind advisory that day. As I rode in the ambulance to the hospital, I got to hear the dispatch report downed wires… then reports of smoke, then brush fires. Then MORE downed wires. And a flipped car. It sounded like a busy day.

It was.

When I got to the hospital, there were no slots open in the ER. So I was parked, along with the paramedics, still on the not-designed for-7XL-scale-humans gurney, in a hallway.

For an hour.

During which time my wife couldn’t come see me. But eventually they got me in, and she could sit with me… and worry. All we knew was that if they took the oxygen off my face, by 02 level dropped like a rock. From 97 to 70% in the seconds it took to switch me from the paramedic’s tank to the ER supply. And we did not know why.

Thankfully, our good friend Carl had, as soon as Lj had notified friends I was headed to the ER, told her he was on his way. They let him come into the ER bay I was in, and stay with her. And for a few hours, we all waited, while they took blood, strapped electrodes to me, ran machines in and out, slid x-ray plates under me, and said they’d try to figure out if it was an infection, covid, an as-yet unknown virus (yeah, they called that out as a specific possibility), sepsis, heart attack, or something else.

But at least I could breathe… shallowly, with the help of a machine.

We’ll get into the move to a hospital room, the diagnosis, and my eventually discharge in Part Two… which will be out when it’s out. [Edit: It’s out, find it here.] This post represents all I have been able to do over Saturday, Sunday, and Monday, and I have no idea how long the next post will take. I’ll do my best to update y’all as soon as I can.

I DO want to say that from firemen to doctors to nurses to account reps and outpatient services, everyone I dealt with was professional, efficient, never dismissive and (with the exception of one grumpy nurse who was at the tail end of an 14-hour shift) polite and considerate.

Methods of Support
So, a lot of people have offered a lot of support, and I deeply, deeply appreciate it. There are plans moving forward to try to help cover medical bills and loss of income, and when they’re ready, I’ll announce them here. I may end up needing to turn to extraordinary measures, such as a GoFundMe, but I won’t be doing that until I know for certain I have to.

However, if you DO want to offer immediate support, I won’t refuse it. You can join or increase your membership tier at my Patreon, or if you prefer do one-time support through my Ko-Fi.

Thanks, folks.

Owen