Not as planned

So let me set the stage: I am currently sitting in a studio apartment, about 800m away from the drop-off point at Tan Son Nhat airport in Ho Chi Minh City while writing this. Roughly one and half months have passed since we arrived here for a one-month stay. Visiting relatives of Quy, traveling a bit, remote place to chill in a destination far away from tourist hot spots. That was the plan.

We are taking our return flight back tomorrow. I will be driven around the airport in a wheelchair (“Assisted Person”). My visa ran out 2 days ago, but nothing that can’t be sorted with the official overstay fine in VN. Generously got a Business Class seat from travel insurance, top service. Was briefly a med-evac case for REGA ambulance jet service out of Southeast Asia until my condition improved rapidly, for some reason, after an almost 3 week long stalemate.

Right now I am doing fine, well, based on the circumstances. I can’t walk in the humidity and heat of the day for more than a few minutes, so I’m hotel-room bound. I am looking at muscle loss due to the long hospital stay and due to the high dose steroids. Lost muscle, gained fat, hooray, exactly what I needed ;)

So, what happened?#

We arrived on January 3rd. I noticed a slight cold coming up, scratchy throat, nothing serious. About 48 hours later, I noticed my skin had a yellow tint, my eyes too - a signal I learned to be paranoid about after my first flare up 6 years ago - and we immediately went to get a Haemoglobin and Bilirubin check at a local walk-in lab. With that test confirming my suspicions, we went to Tam Anh Hospital and they confirmed Haemolysis as well as Sepsis and that’s the beginning of 5 weeks total hospital stay.

The Sepsis was the trigger. Which little bugger made me go down the spiral we don’t know. Something got a hold, chain reactions ensued, I was knocked out and basically out of commission for 1-2 weeks in a fever state and another week on almost constant IV antibiotics, blood transfusions (I have certified 100% communist blood now, comrade), blood pressure induced collapses, you name it. Fear and loathing in Tam Anh. I remember a few key experiences and yeah, those are not quite worked through yet.

Once sepsis was deemed managed, steroid treatment began but the response was weak since basically everything was wrecked by the preceding therapy to get rid of sepsis. At that point we naively thought that there’s still at least some chance of having a week or so of chill but that hope was crushed quite decisively with a critical broad axe roll. Funny in a way, I clearly remember marking each step of the famous “5 stages of grief” for my holiday. The bargain. The disillusion. The acceptance.

After a few days, things started to improve, decisively past the Nadir of 4.7 g/dL Hgb (you should have about 12-14, otherwise you’re anaemic or close to it - varies by gender, too). We got discharged, I was feeling much better and with a bag of “candy”, we got to a hotel room that replaced the double-bed hospital room situation. I hoped for improvements of the situation.

Something must have been off with the calculation of the dose conversion IV -> oral and since I was the first WAIHA case in this hospital (this is a rare thing), well… I spent way too much time since digging through and accumulating a corpus of knowledge in an LLM assisted project based on standard WAIHA literature to make certain connections, verifiably and watertight. This was uncharted territory for the team. I’m not getting into details here, this is an entire story in and by itself.

For this reason, I was back at the start 4 days later on my follow-up. Hgb dropped, Haemolysis continued, the treatment window for steroids as a first line medication was closing (three weeks) and I was not in a position to do much, being in this state. While mentally more or less clear, I assume that was partially my subjective feeling and objectively, I was probably as delirious as ever. I will probably never know.

So back we were, at Tam Anh’s lovely embrace, we pushed for a private room (oh you so don’t want a double situation on steroids), Quy managed to quite elegantly “acquire” one where we basically walked by and was not yet in the system marked as available (Quy managed everything - I owe her my life).

Then I suggested the docs to put me on the highest therapeutical dose. Or pulse dose me. Anything to get the chances up of stopping the flare. What they did was put me on 200mg/daily Medrol/steroids, for 3 weeks total, which at the time I had no idea about consequences or the damage that this path would cause.

Before the treatment window closed and with marginally better (“stable”) but unfit-to-fly values, we decided to refuse second-line treatment in Vietnam and find a way to go back, no matter what. I wasn’t about to continue this, I’ve seen too many issues, small and big ones, and I guess I was finally clear enough to try and influence the situation. I was just not able to before.

You see, I don’t blame the VN system - they do what they can, with the tools and the knowledge they have. And that is far, far beyond the standard of any hospital in Central Europe. I am not a newbie to the country or its culture. Half my family is Viet. I never expected anything more than what I knew was possible. But judgement calls on second line treatments that escalate dramatically - nah.

And by then, I was not only coding almost 24/7 on steroids like a maniac to keep my mind busy and try to distract myself from the situation we were in, I also built up enough knowledge to basically make up my own mind about the entire situation and realised that there’s no way forward here.

And, in hindsight, that’s the fundamental issue. I should have made that call earlier. I know that now. Looking back at those weeks in that private room, fueled by insane amounts of steroids, I was basically completely drugged out of my mind and simply unable to see anything clearly. I probably wasn’t the easiest colleague to deal with during those weeks.

Quy was busy making sure I got my meds, took care of talking to everybody and helping me manage a plan for nutrition I set up myself to “hack” the basics for getting out of it medically and so much more. She didn’t have the bandwidth to process that either.

This is how it goes. And I know. “Call REGA”. I heard this all the time. No, I am not - or was not - a member. And they would have never got me out of there if I’d just joined and sent a flare up into the sky couple hours later. They confirmed as much, later (foreshadowing). It’s not how they roll. And, it’s not how I roll either. Fact check: cost coverage for SEA extraction is about 100k flat, without warranty of full coverage. I wouldn’t even be remotely in a postion to come up with this much money.

Then I remembered I was in touch with a Mobiliar agent and she suggested I call Mobi24 to get a flight back, as part of my travel insurance. I earlier applied for insurance coverage of the cancelled flight, after all I kinda got that insurance for stuff like that. Well. A “flight back”. I thought, ok I will do that once I am stable.

Little did I know that this actually includes emergency extraction as well - shocked pikachu face - as I soon found out. Because the first thing that they did was forward me to REGA. Now, “How was I supposed to know?” - I don’t know. I have to reconcile this when I’m back home. For now - I have to deal with the consequences of my actions, whether I made them rationally or drug induced, that’s just the way it is.

And well, that’s where things went super quick, assessments were made, phone calls were had, documents were shared, waivers were given. And 48 hours later I basically had a backup plan, apparently cost covered fully for an ambulance jet extraction if it came down to it and an immediate flight back if I got above fit-to-fly.

We agreed with the doctors to either release me on the Saturday before Tet if my values improved for staying outside the hospital or keep me to wait for extraction if not. Miraculously my values climbed almost above fit-to-fly on this day, I was released, we moved to the room I’m currently sitting in and things have only gone better since.

There’s a lot more to tell. A lot more. But I think this sums it up.

We’re back on Friday.