Let me introduce myself: I am 26, originally from Europe and doing my master's degree in Japan. I felt like writing this post to share my experience with joining the club under somewhat unusual circumstances and being very far away from home, and perhaps someday someone in a similar situation could use it as a reference, or maybe some kind of reassurance for themselves.
As I believe is the case with lots of T1 people, it all began quite rapidly and dramatically: just a couple weeks before me visiting the hospital, the thirst had kicked in. My god was it bad: on some days I burned through 4-5 litres of liquids, which simply wouldn't want to stay in my body. Every morning, the first thought being "I have to go, NOW". Then I'd start getting night or morning foot cramps, which would make navigating stairs to reach the loo oh so much more fun.
At first I thought it might be some metabolic imbalance, maybe vitamin shortage. As a life sciences major, I know that body can pull many stunts like that if it lacks some seemingly minor thing, and with my somewhat irregular lifestyle due to grad school for the past month or so, I had certain support for my guess. So I decided to drink plenty of supplements for a week and go see a doctor to get some blood work done if there is no sign of improvement. In retrospect, maybe that's the thing that reduced the severity of my ion imbalance when I presented to the doctor's office with DKA the week later.
The DKA... Overall I didn't feel horrible, to be fair. We had an upcoming 4-day weekend due to national holidays, and on Wednesday, the last business day of that week, I went to see my trusted ENT with another guess that maybe my semi-chronic sinus infection has gone out of control. Happened before, no biggie. Mentioned all of my symptoms so far, got a reassurance that in this unstable weather lots and lots of people complain of dry mouth due to allergies and inflammations and whatnot, muscle cramps due to temperature variations are also not unheard of etc., got an antibiotic prescription for 4 days and was told to come again on Monday if there's no improvement. Felt like it was working for a while, but on Thu-Fri night I had noticed that my heartbeat is definitely too rapid and strong for the resting state, so I knew I had to go to a no-holiday clinic the next day, and so I did. After looking at my questionnaire, the doctor has asked to submit a urine sample. In just 10 minutes they're telling me that I have sugar in it, along with extremely high ketones. I already know where it's going. Finger prick, glucometer, and I measure at 760 mg/dL. Trying to keep his face as calm as possible and even doing some small talk like where am I from and how long have I been staying in Japan, the doctor informs me that we have a medical emergency here, and they'll prepare the paperwork for me to get admitted to the closest hospital immediately. The nurse in the examination room definitely wasn't as calm, her face read something along the lines of "you might as well be comatose at this point, but your speech is not impaired at all and you're telling me you came here by bus?"
Leaving the clinic, my girlfriend and I catch a taxi and go to the hospital. They're already informed of me coming, and soon enough I'm hooked to saline IV drip, and after about an hour of physical examinations and having my vitals measured, they guide me to their ICU. For some time it was mostly nurses putting more needles into my hand, but eventually the doctor who admitted me comes and starts to explain the situation. My blood work came with BG of 850 mg/dL and A1c of 12, strongly suggesting T1 diabetes that has been going on for a couple months at this point. I get told that they'll continue drawing and checking my blood, and get me started on IV insulin pump as soon as my blood potassium is more stable and they fix the slightly lowered blood pH of 7.3. Overall everything is very professional, no escalation and no panic. I'm reassured that they will be looking at my condition very closely over the night, so shouldn't worry and can get as much rest as I need. The rest of the evening has been more or less uneventful, mostly involving me browsing this subreddit to get a glimpse of what I may be facing in the future.
Next morning I was considered stable enough to be moved from the ICU to regular patient room, which marked the beginning of intermittently frustrating 4-5 days. On the first day (Saturday) they have stopped the IV fluids (fun dehydration data: in 20 hours I have received 5 L of IV fluids, yet produced only 800 mL of urine) and eventually the insulin pump as well, however nothing more was being done. They let me eat the regular hospital food, which included around 70-80 g of carbs per serving in form of rice and occasional fruits, but didn't bother to check my BG more than 4 times a day: before meals and before sleep. BG always measured above 400, and they'd start giving me a small adjustment dose of insulin from the day 2 noon, but it was always very conservative and not enough to help the glucose drop to slightly more human[e] levels. On Sunday, my doctor-in-charge was absent as well, and the temporary replacement doctor couldn't take responsibility for any changes in the regimen, including my request to maybe measure at least the postprandial BG as well, so that, you know, we could start collecting more meaningful data and seeing some trends. "We will discuss and consider it" was the answer, which after spending 1.5 years in Japan I knew meant "sorry, I think you're out of luck here".
Monday is when things started moving into better direction. My doctor came in the morning and I could express my concern about measurement and injection frequency to him.
— Do you think it's too frequent? We have some patients complaining about that.
— God no, on the contrary, measure the hell out of me – I don't mind the occasional finger pricks.
— Got it, we'll adjust it. We will also have a dietician and a pharmacist visit you to brief you on various things today or tomorrow.
Okay, that's more like it.
That evening I was given a glucose meter to do the measurements myself. "Nurse will come to help guide you while you learn. We'll also tell you the numbers for insulin units you receive from now on."
By Tuesday they have arranged an insulin pen prescription, so I was taught how give myself injections as well. They also gave me a set of Japanese DVDs for newly diagnosed diabetes patients and asked me to take a close look. Now I've read accounts on the Japanese medicine being very modern, yet clearly lagging behind the West in some aspects, however I hadn't experienced the latter before I watched those DVDs, which were produced in year 1996, and also obviously aimed at T2D patients, one reason for that being an extremely low incidence of T1 in Japanese population. In other words, looking at middle-aged Japanese people managing T2 by exercising in those cheesy 90's track suits and fearmongering about their experiences of becoming blind or requiring dialysis due to negligence was... fun, so to speak, but not exactly helpful. Well, not a big deal, the internet has much more information on that, and I've been educating myself for 4 days already in absence of any better things to do in the hospital.
Tuesday evening my doctor comes for a long talk. Says that they're looking at having me discharged tomorrow, asks me if I have any questions or worries. Lets me know that the GAD antibody tests came back positive after all, but some more antibody tests will come later and she would tell me the results on a next Friday appointment. Tells that they are looking into the nearby hospitals that deal with CGM solutions and that they will arrange all the referrals for me. Wednesday morning they hand me all the supplies: 2 pens, needles, a glucose meter, and even a huge box of alcohol swabs and glucose pills, all covered by the public health insurance (here as a resident I have to pay 30% of total medical expenses, and can file for a refund if expenses exceed my monthly premium, depending on my tax bracket). Instructions are that I give myself 6u Lantus every morning and 6u Novorapid before every meal, without any adjustments on my own for now, before they are confident that I have enough experience with controlling the condition well enough. I am not explicitly told to count carbs or calories in any way, but I say to my doctor that I intend to do so from now on, and she replies that it's a good idea, as long as I take all the precautions to not go hypo, and we shall see each other next Friday and see how well I'm doing. With that my attending staff members wish me good luck with warm smiles, I pay my bills and head out home.
These 5 days of me being on my own, by experimenting with my carb intake and meal composition I have managed to get my BG from mid-300s into 130-250 ranges (god it can be difficult to find proper food sometimes, with rice being bloody everywhere), which makes me happy, even though I definitely struggle with getting more stable values throughout the day. On Saturday, when my glucose was possibly the lowest in several months, I was riding my bicycle and thinking that I haven't felt so good for quite a while. Then today my doctor has called and told me that they have arranged the appointment with another hospital and I may be able to apply for CGM soon enough, which hopefully would make the BG monitoring so much easier.
Overall, I think I got a very good treatment, despite the few hiccups here and there. I was lucky to have a good command of Japanese language by this point, and it feels that my doctors did their best to educate themselves on the topic of T1 management, with my case possibly being among the very few, or maybe even the first they have seen in their lifetime. I could have gotten into a hospital with older, more conservative doctors who believe only their own authority (generally in Japan, two main things not to ever be questioned are age and doctors, which can make a dangerous combination), or I could have been without a support that I got from my girlfriend and even her family during my hospital stay. I am also not sure how far could I have gone without speaking Japanese: in my previous experience with medicine here, some younger doctors speak excellent English, but that cannot be said about everyone – I wouldn't expect the same from nurses, for example, and 80% of my interaction in the hospital was in fact with the nurse staff.
I am definitely not ecstatic about my diagnosis, but I also understand it is not the end of the world, and there is no reason to pity myself or despair. Perhaps with more healthy lifestyle my overall health will become only better than before – the time will tell. But for now, I will continue living my life and hopefully learning to manage everything better day by day. That's my story and experience so far, and my thanks go to everyoneone who had the patience to read it through. Of course, any comments, suggestions or accounts of similar experiences are more than welcome, and I'll do my best to reply to everyone.
Lastly, my big thanks go to this subreddit – it has been a great source of information and reassurance, and I expect to become a frequent visitor here from now on.
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