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