The Zen Leaf

A few years back, I had a severe pain in my back that turned out to be a kidney stone that had gotten stuck and was causing my kidney to swell. At first, I went to Urgent Care, where they diagnosed it either as “menstrual pain” because I was bleeding, except I knew this was more than just cramps, or “muscle strain.” Like WTF dude, I know what a muscle strain feels like and this ain’t it! This particular Urgent Care had botched more than one thing with us, so after I walked out those doors, Jason drove me immediately to a nearby freestanding ER instead. They took wonderful care of me, and so when I decided to go to the ER on Saturday morning, that’s where Jason took me.

Notes from the ER:

• It took three tries to get an IV to work because despite all my attempts to stay hydrated, I was so dehydrated that my veins had shrunk and my blood was clotting as they drew it for tests.
• The ER doctor suspected a parasite that can be passed to humans from animals who have been exposed to contaminated soil or feces, and since the ferals lived in a yard full of garbage and feces, that seemed a likely suspect. Didn’t turn out to be that, but yikes.
• I had a CT scan with contrast, and what came back on the scan was massive inflammation and infection throughout my entire large intestine. I was diagnosed with colitis, and a stool sample would go off for culture testing.
• My white blood cell count came back twice as high as the normal range, and my lactate level was sky high. This latter is a sepsis indicator, though no one said the word sepsis to me until I was checked into the hospital.
• They had to give me a covid swab before I could go to the hospital, and GAH I hate those up-into-your-brain swabs! (Negative.)
• I was transferred to the hospital in a van-ambulance-thing. The back of ambulance transport is very rocky and bumpy and feels very unsafe. I also had to keep my eyes closed the whole time so that I wouldn’t get motion sick.

I arrived at the hospital around 1pm and was put in a single room, which given the nature of the infection and symptoms, I was supremely grateful for. (Later, due to a maintenance issue with the first room, I had to be moved to a double, but the second bed was blocked off and I was categorized as “in isolation,” so I had no roommates besides Jason.) Observations from the hospital:

• The younger nurses, lower-ranking nurses, and overnight nurses were all much better than the older, senior, daytime nurses. The former seem to focus on patient care, the latter on cursory medical care. Thankfully, I had mostly good nurses.
• It sucks to wake up multiple times a night not just for checks on vitals and blood draws, but because housekeeping comes in to change the trash at 4am.
• Especially because the hospital beds/pillows are UNCOMFORTABLE so I hardly slept anyway.
• One nurse, the worst of the lot, refused to use the word “diarrhea” but instead used “poopies” like I was five years old.
• It’s really scary, after discovering you’ve also been diagnosed with sepsis, to hear multiple overhead medical alerts (for other people, not me) saying, “Sepsis alert, Emergency room X.”

The first afternoon in the ER, I had a lot of extra care because of my sky high blood numbers, as well as some screwy vitals: blood pressure extremely low, pulse super fast at around 130 bpm. I had tons of saline pumped through me. Something like six bags the first afternoon, and even with all that, my bladder was empty. Unfortunately, because of the three-tries-to-get-an-IV-in, the placement was in a weird little vein curve, and I couldn’t bend my right arm at all or it would get kinked and stop flowing. My right arm and dominant hand were rendered practically useless for the next few days, especially as the hand grew so swollen from fluid after a few hours that I couldn’t make a fist or touch my pinky to thumb. My left hand is naturally clumsy, and still recovering from wrist surgery, so it doesn’t bend all the way yet. Let’s just say that that made cleaning up from bathroom trips very difficult and humiliating, and my husband is an absolute angel. It doesn’t help that on top of everything else, I started my period on Saturday, so I was dealing with additional blood and cramps, too. Go, me!

The first two days in the hospital, I was dizzy and disoriented, and too weak to even hold my phone, so Jason was updating family and friends. I am SO GLAD that covid restrictions have eased up in hospitals, because not only was Jason able to stay with me during the day, he stayed overnights, too. I needed so much help. I couldn’t do anything on my own, not even get out of bed, and most of the time, the staff was spread so thin that it would take ages for them to respond to requests for help. Other than Jason, I didn’t want visitors while I felt so crappy, but my hiking gals sent me a wonderful living plant to brighten my room. It made me cry. I mean, I was a mess, so tears were easy, but it was such a thoughtful and sweet gift, and the fact that they chose a living plant so that I could add it to my garden when I got home was just so thoughtful and amazing of these women.

On my second day (Sunday), my cultures came back to show the E. Coli and campylobacter infections. IV fluids and antibiotics continued. I was moved from clear liquids to “light food as tolerated” (I managed to eat two sandwiches that day, that’s about it). In the afternoon, I had my last dose of pain/fever meds. Finally, I was allowed to shower, which was good, because I’d sweat so much during the fevers of the sepsis that my own smell was making me nauseous, ha! In the evening, due to a leaking pipe, I had to move to that new room.

Day 3 (Monday): As my lactose and other blood work had all gone back to normal, I was taken off IV fluids and switched over to pill forms of my two antibiotics, to see if I could stomach them without nausea (a common side effect of both). I had a real breakfast. (You know you live in the southwest when you get a deconstructed breakfast taco in the hospital.) I started feeling well enough to sit up a little and hold my phone for very short periods of time (still too weak for long, and I’d get dizzy if I scrolled at all). I noticed in the morning that my overnight nurse had accidentally written that my preferred name was Barbara on my board, because that had been my day nurse and was written right under my name on the previous room’s board. Ha!

Day 4 (Tuesday): My bloodwork all came back normal, and my vitals were back to normal ranges as well. I tolerated the oral antibiotics fine and was able to eat normal food all the previous day (if at a slow rate), so YAY I was discharged around noon. I looked a right mess – I joked with my siblings that I had Bride of Boogedy hair – but hey, I had healthy color in my skin and I wasn’t waxy and deathly pale anymore! The nurses wheeled me out of the hospital via wheelchair, which made me extremely motion sick (!!!), and so I kept my eyes closed on the way home. (Turns out that dizziness and visual distortion are a common side effect of one of my meds. That explains why I can’t scroll for long on my phone, too. Essentially, I have horizontal vertigo. It’s like I’m wearing glasses with a slightly off prescription, so my eyes are constantly trying to adjust. So no driving for me for the next 10 days.)

Now I’m home, I’m like 90% back to normal, feeling healthier than I’ve felt in weeks, so that’s great. Also: bonus of going into the hospital and being on clear liquids for 36 hours is that you don’t get any coffee, which means that I finally got the kick in the pants I needed to give the stuff up. Yeah, I had a caffeine withdrawal headache on top of every other thing, but I stayed strong and stuck with unsweetened iced tea with lemon to ease the headache. (I’m still not a fan of tea, but iced tea with lemon is actually better than I expected. I wouldn’t want to drink it forever, but it’ll do for now.) I’m now six days coffee-free! Hurrah! And now I just need to finish the ten days of antibiotics, get follow-up care from my doctor, be mindful of secondary issues (like intestinal abscesses or post-sepsis syndrome), and rebuild my gut flora without probiotics since I’m allergic to one of them (heh).

Y’all. I’m happy to be alive. I’m happy to feel better. I’m happy to be home in a better bed with a real shower and real clothes. I’m happy my boys were old enough to look after themselves and the house and the cats for four days and three nights. I look forward to getting my body moving again as soon as the vertigo goes away, and to improving my health in many different ways. All this sucked, but life is better now. I made it through to the other side.

Warning: This is long and a lot of it is personal record. Feel free to skip.

I didn’t mean to disappear for over a week. I had drafts written or partly written, waiting for me to finish up and post. Then I wasn’t feeling the best, and eventually, I landed first in the ER and then in the hospital. Turns out, there were two colonies of bacteria – E. Coli and campylobacter – eating through the lining of my large intestine, causing massive inflammation and infection, which eventually turned into full-blown sepsis.

Here’s the thing. I grew up in a household that never went to the doctor unless it was an emergency, because our insurance was terrible and we just couldn’t afford it (thanks, US health system…). When we did go, it was often to a crappy Urgent Care facility, where we often got inadequate care, so that my mom’s distrust of doctors and the medical system grew even worse, and we went even less. That meant a lot of self-diagnosis and treatment. As an adult, I’ve really tried to not do this, but after all the years of my original tooth infection causing all kinds of crazy problems in my body that my doctors couldn’t figure out, I got referred to as a hypochondriac often enough that I, too, started to avoid going to the doctor unless it was an emergency. It’s really hard to advocate for yourself when your primary care doctor thinks it’s all in your head! Thankfully, I have a really good PCP now, and we’ve been working through a LOT of backlogged stuff this year, but old habits die hard.

My symptoms began with a random fever on June 22nd. The next few days, I got progressively sicker (all digestive, no fever), but as it was paired with drastic blood pressure and pulse drops, I suspected it was a reaction to my new medication (which was to drop blood pressure and pulse!). Instead of going in to the doctor, I got off the med and things improved over the next few days. Then they stopped improving, and stayed in a place of just-slightly-off. Instead of going in to the doctor, my family all took an OTC treatment for parasites you can catch from, say, feral kittens who were living in a hoarder’s yard. That seemed to really help, and I got almost-better. I did contact my doctor during this time, and I also had an upcoming appointment already scheduled. Unfortunately, there was a mix-up at their office, and she didn’t receive the contact (sent 6/25) until 11 days later. By that point, I was at the almost-better stage, and my appointment was less than a week away. Via phone call, we agreed that I didn’t need to make another appointment before then.

I went in for regular bloodwork on Thursday, got the results Friday. The results were…chaotic and weird. Definitely abnormal for me, especially as my last set of the same labs was just in April. Honestly, I just thought my body was falling apart given my inability to exercise for two months now. Exercise is kinda crucial for my health!! Then on Friday afternoon, I had another random fever. (Somewhere between the 22nd and the 9th, I had another random fever that lasted for an hour in the middle of the night, but otherwise, no fevers.) Literally, that fever on Friday afternoon was the first time I’d felt really sick since June 25th. I couldn’t eat much that afternoon and evening.

At 2am on the 10th, I woke up freezing cold, shaking uncontrollably, nauseous and sick, a fever over 101, my abdomen in excruciating pain. I tried to tough it out – yes – like it was any stomach flu. It took 2.5 hours for me to wake Jason up. I finally fell asleep for a short bit around 7, then by 9 was up and in pain/cold again. Lying on the floor outside my bathroom, feeling like I was going to die, I told Jason that it hurt worse than labor and delivery (and I had all three of my babies without pain meds!). That’s when I finally decided that I needed to go to the ER.

And good thing, too, because sepsis is no joke, and I was fully septic, and I could have died if I’d continued to tough it out at home. All the while thinking, “It’s just a little stomach flu, you’re just whining, yes it hurts, it always hurts, you’re going to go to the doctor and they’re going to say ‘well what do you want us to do about it?’ and you’re going to feel stupid and no one will believe you when you say something’s wrong the next time.” Because that’s what those doctors did to me in those years of tooth infections – told me I was overreacting, over-dramatizing, or full-on making it up. I almost died this weekend because I didn’t want to be the annoying patient who wastes the doctors’ time.

Yes, this makes me very angry. It also makes me a lot more cognizant of what’s going on in my head, so at least I’m a bit more aware of what’s happening, and can maybe be more proactive about ignoring that voice in my head that tells me to stay home. Because every single time I’ve gone to the doctor for a problem, there’s been a reason, even if they couldn’t find that reason. Their inability to find a cause for my illness doesn’t mean that my illness isn’t real. And I need to remember that. I never again want to end up almost dying at home because I’m afraid to go to the doctor.

There’s a lot more to the story after me going into the ER, but this post is already long, so I’m going to call it part 1 and write the rest on another day.