Mylo's Medical Misadventures

Beloveds.

We are not thrilled to come to you, hat-in-hand. And yet, here we are. (The hat's a metaphor, but I will hold a hat for you, if that helps).

Long story short: Mylo having two medical emergencies a month apart, right before Poppins gets here, have put us in a financial bind and we need help.

Long story very long with all the details: (I mean all the details. Look. I like details. I'm bringing you on the journey we went on).

(tl;dr at the bottom if you just want the highlights)

(with content warnings for mental health, trans healthcare in the USA in 2023, and medical emergencies/hospitalizations)

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I (this is Mylo talking) have a history of mental health issues. I'm sure many of you can relate. And, being a trans person in the US in 2023 is it's own mental/emotional/etc. challenge. By May, my depression and anxiety were at a point that my performance at work (a place that was directly contributing to my depression and anxiety - in no small part because I do not feel safe being openly trans there, so I'm back in the closet, again, but this time as a man?) had completely tanked, and by June it was clear that I needed to step away for a while for my safety, and because, frankly, my work was so bad that they would have most likely fired me if I hadn't. (A couple years ago, I had a severe mental health crisis and there were warning signs I might be heading that way, again).

So, I have been on a mental health leave since early June. Which is fine. But also a bummer. Because navigating the short-term-disability to get the money for it is not smooth, AND, disability does not give you as much money as working does. But we were gonna make it work. I've been doing some pretty serious work on myself and getting my mind and spirit ok so I'd be in a place to support Ranwa (don't forget, all this time, Ranwa is more and more pregnant every day) and, eventually, Poppins (the baby we are expecting in TWO WEEKS as I type).

THEN. The real adventure. On Wednesday, June 14, after my therapy session, I head over to Kaiser (my medical provider) to get my COVID booster and have some over-due labs drawn and pick up some needles for my testosterone. Astute readers of my facebook wall may remember me having a bit of a meltdown post that day when there was a hiccup in getting one of the kinds of needles needed. The existential panic that set it, as a trans person in 2023, having issues accessing my trans-related healthcare, in what is allegedly one of the "safest" states, and in a particularly "safe" part of said state, was more than my lil fragile self could handle. And I had an epic panic attack. (A lifetime of masking meant that, if you were just looking at me, you'd have NO IDEA ANYTHING WAS WRONG. But I was heart racing, head spinning, sweating, nauseous, tunnel-vision, spinning out, couldn't process what was happening around me excitement). So I posted my lil "hey, things are not great" on facebook to try to get some solidarity while I finished my appointments (and solidarity/support I got. In droves. You're all amazing and wonderful). And I got myself home and I basically collapsed for the rest of the day.

The next morning. Thursday. (two weeks ago, today, as I type) I woke up feeling BAD. Like physically awful. I was frustrated that this panic attack was continuing. And that it seemed to be manifesting more and more physically. I had the "elephant on my chest" crushing pain. I was still very dizzy. And I was winded just walking down the hall. So I used so very many of my toolkit of skills to try to center and ground and calm myself. And it just wasn't working. (obviously, I know the classic "crushing chest pain and shortness of breath means go directly to the Emergency Room do not pass go, do not collect $200" - but when you're someone with anxiety and panic disorder, lemme tell you. Those symptoms come FAR TOO OFTEN and in this economy an ER visit every time I had those symptoms would have me weekly checking in for a very expensive "you're fine. Just get some rest"). The shortness of breath was what was kind of getting me concerned. I kept googling "panic attack and shortness of breath" etc. Google MD is not super helpful. This continued all day. I didn't really get out of my chair. I felt like hell. Was it because I got a COVID booster the day before? Was this all just panic? Was I having a heart attack and being a stubborn idiot? Who could say.

Eventually, it's time to bring out the trash and recycling which has been one of my jobs for a while, because, have I mentioned, RANWA IS VERY PREGNANT and we live up a total of 32 steps. But, because I am NOT OK, Ranwa starts to do it. And I can't make them do all the trash and recycling. I can at least help, and our powers combined will get us there. I get down the stairs once and I am toast. I'm about to pass out. And I still have to go back up. Somehow, I make it to the top of the stairs and I am no longer able to pretend away what's happening and I spend probably 15-20 mintues figuring out how to tell Ranwa I think I need to go to the hospital. (And, eventually, say "I think I should go to the hospital. But first I want to take a shower to see if I just feel better"). So, I take a shower in the hopes that it makes me feel better, but at least so I'd be clean at the hospital. I don't feel better after the shower.

To the emergency room we go!

***Please know, this ENTIRE time I am certain it is really all just a panic attack and I am very mad at myself for being so very dramatic and for putting my VERY PREGNANT SPOUSE through this stress.***

Thanks to poor signage, Ranwa has to drop me off in an awkward place and I have to walk up a few stairs to get to the ED entrance - and have to pause and sit on a bench for a few minutest to catch my breath before I can make my way in. Still think it's all in my head.

Triage is quick, as soon as they see me (I tell them the whole "I had a panic attack. I think it's still a panic attack. But also, I have these symptoms. I feel silly even being here. But...") they say "chest pains means EKG" and, of course, I understand. They say "look, we have to check. And the doctors will review them and if there's something alarming, they'll bring you back immediately - go to the front of the line! Also, it's good you came in. That's why we're here. Come in if you have these symptoms."

EKG is completed and I go sit in the waiting room. Ranwa isn't allowed inside until I'm in a room, so they have to just wait outside while I'm texting them updates. As soon as I see someone who came in after me get called back before me, I'm certain my EKG was fine. So I'm even more convinced it's nothing and I'm frustrated and want to get up and leave. But, I'm here. Might as well get an exam, I guess. I wait for what feels like forever (I just checked text messages, it was less than an hour. For ER wait. NOT BAD. But felt like forever) and get called back. The nurse walking me back is asking why I'm there and says "I bet it's an embolism" and I say "I bet it's a panic attack" and we both say "who knows!"

Ranwa is able to come into the room, which is much better for me. Thank you, Ranwa!!

We're there and joking and trying to keep our spirits up. I CANNOT SAY ENOUGH GOOD THINGS ABOUT THE TEAM IN THAT ED. THEY WERE ALL AMAZING. EVERY SINGLE ONE OF THEM. I meet the doctor and tell him all the same everything. I'm basically like "so, panic attack? Probably just panic attack?" but he's looking at my heart rate and not loving it (it's in the like 120s, resting). And, you know, crushing chest pain and shortness of breath. Here's the thing, though. When I'm in bed, it's not that bad. So I'm even more convinced that I'm fine. The doctor is like "maybe fine. But also, let's get some labs. Also, I am concerned you may have a pulmonary embolism [blood clot in lungs] and I want to rule that out. And, frankly, I want to skip the x-ray because if it doesn't show up on x-ray, I am still going to be concerned and order a CT, so I want to just go right to the CT."

Sounds good. Blood drawn. They come get me for the CT right away. Awesome. Back in the room. Waiting. Waiting. Waiting. They're giving me IV fluids, so that's nice. Waiting.

Thanks to modern medicine, I'm getting lab results on my phone in real time. And I'm checking all of them. (My labs from the day before came in while I was in the waiting room and that was amusing to me). First few things are boring/normal. Then the CT results come in.

----Postive for large pulmonary emboli

----Potential evidence of right heart strain

Then, I see my "Troponin I, High Sensitivity" results - and it's 214. (standard range is less than 12 or 20 depending on if you're measuring me as a man or a woman. So... I'm elevated. And that means acute heart injury).

I say some swears and hand my phone to Ranwa who says some swears. The nurse comes in and Ranwa says "did you hear our swears, is that why you're here?" and he says "nope, but I did get your CT results, that's why I'm here" and we say "that's why the swears!"

There's a lot of "good thing you're here" and also, at one point, he says "I called it!" and I'm impressed by his diagnostic skills.

Very soon after, the doctor comes in. He confirms that what I read is real and there are LARGE emboli. His demeanor has shifted. We're in serious talk time, now. He says I am definitely being admitted. And that he is consulting with multiple people to determine the appropriate plan of care for me because of the severity of my embolism, but also, because I'm presenting fine, it's not super clear. But, either way, he's starting me on anticoagulants now.

Great.

He goes off to be kind and patient and attentive with other people. (Again, cannot say enough good things).

I'm fine. Everything is fine. This is cool.

A new doctor comes into my room. This must be the person admitting me.

"Hello, I'm Dr [Mylo Remembers No Names]. I'm from the ICU."

THE EXCUSE ME SEE YOU?!

Conversation ensues. Basically, my. labs and CT say ICU. My presentation says the regular floor. BUT... because of my CT and labs, right now, I'm still in a lot of risk and things could go bad, fast. So... I have to decide if I'm going to the ICU or the regular floor. I'm basically too sick for the regular floor and too healthy for the ICU. But, if I tank and I'm in the ICU, they are there and actively monitoring me and have everything they need to deal with it. The floor doesn't have as much. And, the floor is scared of me and wants me to go to the ICU. But I don't want to go to the ICU because that is very scary. Ranwa votes ICU. I'm... ambivelant but leaning toward regular floor. Doctor says "tie goes to spouse" and I'm ok with that. I have to go through consenting for all of the very scary invasive procedures they will have to do if I do code.

So, hahahaha. Fun. I'm going to the ICU? Out of an abundance of caution. Just for observation.

They move me to a new room in the ED, where they can hook me up to all the monitors and keep an eye. Everyone is treating me a lot differently than when I arrived. Because, you know, they've seen my labs. Which kind of makes me realize how sick I am.

At about midnight, the nurse who did my triage comes into the room and says "YOU! I am relieving your nurse for break and saw your name and had to come see you. You're still here! And you're going to the ICU!! IT IS VERY GOOD YOU CAME IN. NEXT TIME DON'T WAIT SO LONG"

Five more hours of waiting. Finally talked Ranwa into going home to try to sleep, get moved into a more comfortable bed for waiting. Get a little sleep. Mostly just wait. A lot of waiting.

Eventually, I get moved up to the ICU. And let me tell you, so much of my ICU anxiety was that I've been in ICUs and they are loud and chaotic and cramped and scary. THIS ICU IS NOT THAT. I had a swanky private room with a door and a window. I'm greeted with "why is this guy here? For heparin management maybe? Doesn't seem like an ICU case." But then I meet my ICU nurse and I love him and he loves me. He wants me to stay his patient forever because I'm not coding. I want him to be my nurse forever because he's great.

The whole point of the ICU was observation. Really, that basically happened in the ED while I was waiting for admission. But, it's fine. I speak with an ICU doctor who tells me I'm hemodynamically stable and conversational, so I'm getting downgraded. Which is great. My nurse tries to convice them to wait until his shift ends. :) I see an occupational therapist who gives me a toothbrush - bless. And has me do some very basic things and I am still NOT GREAT. Hosptial food and whatever happens. Eventually, I get moved to my new room.

Regular floor is still freaked out by me. But they do their best. I do like the fact that I get way fewer pokes and checks, so I'm getting hours of sleep at a time.

(Details get muddier because time all runs together). Basically, I'm having my blood drawn and heparin adjusted and vitals checked and I can start kind of walking a little bit and I'm getting restless and not thrilled to be in the hospital but I'm improving, so that's something?

Also, remember, I came in Thursday evening and I expected maybe one night. But I'm still here. We had tickets to go see Book of Mormon on Sunday and we're realizing that's probably out. I'm starting to get anxious because some big appointments for Poppins are scheduled for Monday and I want to be out.

Sometime Saturday, the doctor comes in and talks to me about discharge. Says I'm doing well, being moved from the IV meds to oral meds (which is a big step towards discharge). Says if PT clears me and I do well on my meds, I will be sent home either Sunday or Monday. Sigh.

Great news! Everything was ok, I did my very best to be ok, and I went home on Sunday!!!

Got to go to Ranwa's appointments on Monday (with my cane, and my sister-in-law as supports for me).

I'm recovering well. There's still a chair in the landing of our stairs and a shower chair and my cane. But I'm very much improving.

Why did I get blood clots in my lungs? Fun fact. Testosterone increases your risk of blood clots. So does getting COVID, which happened in March. So... But, that also means that I will be on blood thinners as long as I'm on t. (The number of times medical providers in the hospital would say "do you plan on being on the hormones for a long time?" and I'd be like "I hope so, because otherwise it means I died?" they very much did not understand the whole being on HRT for life. Sigh. I wasn't in the mood to educate. So I didn't. I was TIRED). So. basically, I'm on anticoagulants for the rest of my life. But I'm not dead.

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TL;DR

Baby coming July 12, Mylo had to go out on mental health leave at the beginning of June straining finances, then had a surprise scary af pulmonary embolism and spent a night in the ICU and a few more in the regular hospital.

So, here we are. At the go fund me.

Medical bills are expensive. We're not certain exactly how much they'll be. But they will be in the thousands. So the goal here should cover those bills, and give a bit of a breather for the other bills.

Folks have been so remarkably generous around Poppins already. So we're not thrilled to make this ask. But, here it is. An ask. Please don't feel ANY obligation. And, our endless gratitude if you can help.

Thank you. Love you. Big sigh.