Tag Archives: okayama university hospital

Healing: just another hospital visit, annotations

9AM Get out of bed Dave, get out of bed Dave, get out of bed Dave. You’ve got to go to the hospital Dave. Put on clothes Dave, take your medicine Dave, get on the bus Dave. Make sure you’re wearing pants Dave. Oh my goodness, have to decide what shoes to wear Dave.

Yep, just waiting for the bus as usual

10AM OK, I did it… Up, medicines, beard oil’d, snappy outfit-ish, shotgun coffee and out the door just in time and experienced all four of Japan’s seasons within the four minute walk from home to the bus stop.

Felt a little bit more springtime when I first looked out the window

{They taught me well at the school for “worlds worst secret agents”}

All of the seasons, all at once: Grey rainclouds, bright sunshine, crispy windiness all at the same time (on rather warm stuffy bus)

11AM Rocking to Belly (the band)’s “Dove” en route to Okayama University Hospital 岡山大学病院 / usual as only this & Bob Dylan’s basement bootleg are in the basc “music” app for past years (i have stashes in Bandcamp & Relisten)

Along with Belly, I’m a huge fan of Tanya Donelly’s solo EP series “Swan Song” and am partial to her songs in Throwing Muses

PS Also have signed #vinyl

11:30AM This is a “foursquare check-in” from Okayama University Hospital. I think I’m the mayor by now :)

Injections impending / 1st of 8ish checkpoints

12AM Update: nurses love my spring blossom vibe tie

{Many things happened}

My tactic with communicating with hospital doctors is taking a printed memo in both English & Japanese (i use machine assisted translation) as most doctors studied medical terminology in “English or whatever” and having something they can read rather than listen is a huge help

{in preparation, February 8, 2024}

2:45PM At least eight hospital checkpoints completed – both medical and administrative – Plus pharmacy (with all the QR codes and special booklets) and now my secret Kissaten was closed but reopened to serve me this glorious lunch with flowers on the table & 3 beverages.

¥950 + ¥400 for royal milk tea
Continue reading Healing: just another hospital visit, annotations

Healing: just another hospital day… again

Hi from Okadai hospital #nophotos

just waiting for injection & thinking about ya.

Hows ya doing?

Left hat in m-i-l’s car (dropped me off en route to table tennis) so my fwa-fwa hair gives me full mad scientist vibes

Outfit pretty cute though / greens, blues & browns

Reference snap / i wanna be sedated bam bam bam-bam

Gosh, the staff/nurses are so incredibly skilled so today was rather rare but had a mishap getting the spike into my arm, required a couple of tries. First time ever for that. They apologized 75 times. All good, wrapped it up tightly / looks like long wait for next checkpoint

Let’s have a simple lunch (not enough time for my usual place across the streets… but there are several restaurants embedded in the hospital)

Fast forward: finished at the hospital and now riding bus to collapse at home

Continue reading Healing: just another hospital day… again

Healing: stumbling (but not defeated) & “rescued” by lunch

Briefly: Messed up date with hospital appointments (every time, like lining up dominos to get all doctors/injections/tests lined up on same day and was supposed to be here last Friday) getting some of the stuff done today but means back here again next Friday. Very discouraged :(

*Not smiling* with my eyes

The hospital staff were super accommodating and got me in for “cocktail injection” and with Chinese Medicine Doctor who reviewed my memo and gave a thorough exam of abdomen, pulses and tongue.

TCM Doctor told me pulses are very weak and shallow, my body is fighting and trying but needs rest + Hot Springs and protein.

of course the hospital has flowers on display

I’ll be back next Friday to finish up the parts of the visit didn’t get done this time including inquiries about options for IVIG & Ozone therapy.

Continue reading Healing: stumbling (but not defeated) & “rescued” by lunch

Healing: oxygen, blood cells, coffee & matching outfits (future acts)

{Unnecessary preamble} Coffee, croissant and ukulele outside for a little bit under the pleasant cloudy skies. Yes, I am Cascadia chap. Happy to be cooling off after so hawt hoomid summer in Japan. Regrouping after hospital visit & recalibrating for the months ahead.

PS (smilin on the inside)

So, before I forget it all, let’s recap the Hospital day… Start from the morning:

OK Dave, get up, vitamins, more coffee, porridge, clothes, packet of papers, wallet and watch and off to hospital with you. Don’t forget your memo! Going to be a long day but you’re gonna get through it.

Made it through the first couple checkpoints, just ate some lunch and heading to wait for Dr number three… but let’s back it up:

Kind of Jack Kerouac vibes for the lunch with a club sandwich, apple pie and coffee in a quiet corner

TCM/Kanpo: First doctor is the traditional Chinese medicine Doctor who checks my pulses and tongue very carefully. Explain that my pulse is quite strong despite me feeling incredibly weak, tired, spun out etc. which is indicative of my body “trying” – but he explained to me very carefully that I have to ‘Shut it down and rest’ for several months. He went on to say that at their clinic, they deal with MECFS and long Covid patients consistently and somebodys aren’t really “pushing back” and I am but need to give time. I asked him about putting on my usual Christmas party and he says “if you can make it very simple then OK…” (Above done in Japanese but you get the point).

He also inspects my abdomen with palpitations (is that the right word?) which is generally a weak point for my wonderful delicate body with a colorful history from Giardia to appendectomies and many points in between, and again, was pleased to see strength and function in this region.

He re-upped my “usual retinue” of powdered traditional Chinese medicine packets – four kinds are used at different times of the day and two more to be used situationally (for times of excess tension and headaches).

Made sure to thank him again for taking the time to truly inspect me, adjust medications and treat me with dignity and respect.

Inputs: Next was heading up to hematology or something department where I get a comically huge syringe with a cocktail of medicines and vitamins injected into the reliable vein in the crook of my left elbow. Laughed with the nurse that her lavender latex gloves matched my shirt and then I showed her my also matching socks so we had a chuckle part 2.

Little things like this make the day go so much easier. All of the staff are incredibly precise with their routines – double checking my name, birthdate, allergies to alcohol and latex etc. even though I am well, very easy to spot and remember in the hospital. I joked that next time I visit the hospital, let’s do the light blue gloves and I’ll wear the outfit to match.

Logistics: I should mention about the check-in process which my darling wife used to assist me with as it’s done with a special card into a special machine which prints out a special paper with special numbers that break down your itineraries for the day, but like a trooper, I completed the task on my own with only mild bewilderment.

In this case, started with three checkpoints which turned into six as the doctors adjust on-the-fly when other treatments can be added (in this case the blood panel, oxygen and blood panel review).

And, to make best use of their time and to have a permanent record and, to assist the diligent clusters of medical students observing, patrolling, and learning, I always take a memo of current situation and my questions. In this case, because of the recent COVID-19 infection and feeling incredibly depleted and a bit scared through it all, I had a few specific questions & paths of inquiry.

The doctors pay close attention to this notes and are rather appreciative rather than annoyed. (Folks who have experienced medical care in some certain countries will really grok the goodness as some doctors take offense to the patient – you know, you – actually asking questions and wanting to participate in the medical care. /rant

[brain imaging: Interrupting myself to remind to better explain the brain imaging scans from previous visit as there was some inquiries… I’m not all that clever except to say that it showed a lack of blood flow to the front of my brain (frontal cortex or whatever which controls executive function), I’m not sure whether it was an MRI or a CT or something else because it didn’t make those horrible noises, yes there was an injection to show contrast in the scan but I don’t know what the magic potion was.

The results were delivered to an app on my phone [as are all my other test results and all the information about upcoming appointments and so on. Also, payments/insurance information is somehow contained within this app. The app is all in Japanese and my reading and writing skills are well, underwhelming and there’s no onboard translation scheme so I just kind of muddle through / onwards!]

Outputs: Dr. 3 also becomes checkpoint 5 after going to back to floor 2 – but this time to the “output blood” department rather than the “input” department mentioned earlier for checkpoint 4, for 6 blood vial draws // nurse was incredibly skilled switching vials one-handed while holding the spike in with the other hand. Precise, confident and swift – and again, double checked name, birthdate, allergies…

and now some kind of oxygen “something something don’t quite understand yet” which will be checkpoint 5 #whew you with me? Let’s take a break.

{this ^^ dispatch is coming from a quiet corner with unscheduled brewed coffee vending break // these machines always remind me of some 70s cop show when the hard boil detective is waiting out a late night shift at the morgue drinking Styrofoam cup coffee… Yes I have that active of an imagination

Oxygen / briefly: Explained the “new/different kind” of headaches I’m experiencing to Doctor who suggested could be “cluster headaches” (unsurprisingly, i experience a whole smorgasbord of headache types) so tried 15 minutes of oxygen – was huge relief and pleasing moments of calm. Want more and will explore getting oxygen for home use. {This was not like a “CPAP” just a simple oxygen mask on my face while chilling on the bed with handy eyemask.}

Stats: After oxygen, the blood test results were already analyzed and delivered so back to the Doctor 3 (infectious disease specialist) who reviewed several of the critical things we were looking for, specifically about white blood cell count (which was above range which in my case is a good sign as it shows my body is diligently fighting the viruses as often times, the white blood cells will just “give up” with an over-clocked immune system (pardon my lack of technical medical language here).

Also checked thyroid function which was all within range (four different levels) and cortisol (also within range). Checks for Epstein-Barr virus were not instantaneous but two pages of results delivered and under an hour // of course all in Japanese and not all of it is easy to colloquially translate yet somehow, felt pretty good about it all. Oh yeah, my cholesterol is ridiculously high which it always has been even when I was a skinny active vegetarian (I am none of these things now). #shrug

Translation: {If someone is really eager to try J>E translating medical terms, I don’t mind sharing this highly personal information publicly because like, “what’s gonna happen? I get more information?” And no, machine translation isn’t necessarily a great fit for this kind of project.}

Art: By the way, there are several restaurants in the hospital i hit up. The other day, while enjoying a club sandwich, apple pie and coffee, noticed some great framed albums / also rotating art exhibit on the wall. Yes this is at a hospital.

Winding down: my usual routine after the checkpoints is to roll by the payment desk and show my app (if you’re curious about Japanese national medical insurance, basically, a significant percentage is covered by the plan and depending on your income situation, you pay some kind of “co-pay” (for lack of a better word) but the amount honestly is some times rather just nominal like a few dollars equivalent).

Anyway, the magical app is connected to a bank account or credit card or something and I just sort of stumble up to the desk, show the paper dispensed from the robot at the beginning of the whole visit and show my app and do my best to smile through my mask because at this point I’m completely deliriously exhausted.

In this case, was there from 10:30 till about 16:00 – sure a long day by my standards but incredibly efficient considering everything done. {In previous countries in which I received medical care, this would’ve been many days worth of appointments scattered at different clinics, labs and hospitals so I am Very grateful}.

Anyhow, then go to the pharmacy where they scan the super-dense QR codes on the prescription sheets given by the doctors and in the past, I would tote the bags home in the van with darling wife but now that I’m rolling solo, instead they courier the medicines over a couple days later after doing a video call to review any changes. The pharmacist realize that I’m not really capable – basically nonverbal – when I drop off the ‘scrips so they wait till the next day to call.

For example: for some medications which I am trying out, they will not package in the little packets in case the med not a good fit for me so I can put it aside. Does that make sense? Anyway they double check everything via video call and then on another app, push a button and payment done. Again, some percentage paid by us, the majority paid by national insurance scheme.

Afterwards, I usually go to “Liberal” kissaten for a quiet meal/coffee, look at books or sometimes scribble postcards but by the time I finished this time, they were closed so instead walked over to an embedded convenience konbini store – as it was so late in the day, darling wife was picking up adorable son from school and they swung by and grabbed me saving me the close to rush hour bus ride (which may have been the factor for previous infection anyway).

This is where I sat and waited for pick up. Since I had a photo of it, I put it here. This is the front of the hospital where the taxis and buses roll through.

I bought them some snacks at the konbini so we rolled home together eating onigiri and egg salad sandwiches with the crusts cut off with my favorite duo.

Not a doctor, duh: Realizing above doesn’t give too much heavy duty medical jibber jabber but maybe I’ll get courageous and productive enough to share the blood test levels… I don’t know, is that a good idea? And hopefully the info about oxygen is informative to other patients and the whole daily routine is of some interest and usefulness.

Please remind me to go slow for several months.

Bonus: so much research, conversation and awareness about this ridic illness so a couple dispatches stashed here so I can find again. Dig if you’re curious:

Oh my goodness, this is all about me ^^

Addendum / dreams:

Next day: Well, folded a bit of laundry, changed the sheets and pillowcases, made tea. And now back in bed.

“Tiny steps” and rest are the requirements but my goodness, I want to write a novel, record an album, send 100s of postcards, and make a video of doing all of the above.

And yes, should not be sharing any of this but honestly, i’m increasingly mentally fragile, exhausted, bewildered, frustrated but still somehow so grateful “this version of my life” found me and convinced i still have a 4th, 5th, 6th “act” in me. F. Scott Fitzgerald was wrong.

Keeping it together my friends, a topsy-turvy stretch but I am still moving forward and letting myself dream big, ergo:

I am always writing “something” – lyrics, freeverse, diaries, shaking out the negative thoughts into slightly vindictive words (yes yes i know), usually in notebooks but sometimes in apps or files i forget, sometimes print & put on the fridge.

Peace from the hospital for all of us, especially you (note Linda Lindas pin)

While I am here, just saying my “dream” for the next 5+ years is to nurture community in my neighborhood with an arts/games/learning/music/coffee space and welcome more guests – both foreign and domestic – to hang out in 土田 since hard for me to get elsewhere.

Healing: hospital, exhibit ideas & pills (yes again)

Sept 1: [summary]

Anyhow, today like a big boy I took the bus to the hospital by myself (usually darling wife drives me and hangs out) but now we’re getting into her busy work season and I need to do this on my own… After the injections, I’m spaced out so will retreat to a little café to regroup.

Next week, our little tiger starts at a new “forest preschool” run by the YMCA which will require me doing afternoon bus rides and then switching to the old timey tram/trolley.

I figured out a routine where we’ll do the switch waiting at the Uno bus terminal station which is a building that looks transported out of a Greyhound station in Chicago in 1963 with newspaper vending machines, cigarettes on offer, and rows of plastic seats but it’s a place to sit down and wait for the bus out of the weather

8:44AM / Wakey: Oh, “Dave is sending a little updates, it must mean it’s a Hospital day and he’s nervous/anxious” Yep 1 hour til bus, still in bed pajamas and coffee mode. Get up get up

I need this guy’s “eye of the tiger” ;)

9:55AM / Bus: Made the bus with perfect timing. Sitting in front ‘co-pilot’ seat to dig vistas along absurdly narrow roads the bus choogles down with nible dexterity & seasoned skill.

Have a transfer at dreaded station bus loop to another bus/company.

Charged up my pre-paid value card on the fly. (This is Hareca card, not be confused with the 383 other cards)

Brought kindly Dr gift packet of Post Coffee (of course i decorated gift bag with appropriate stamps) to go with stainless steel travel Bodum French press gifted last time. Includes 3 kinds of pre-ground coffees (helping her replace can kohi habit)

10:22 / Outfit: Blue Stetson-brand felt fedora, short sleeve shirt (handy for injections), shoulder bag from Kathmandu (note: give it some saddle soap, 7 years old already!), cheap & cheerful & (importantly) soft headphones, & yes Margaret, a mask.

Maybe inspired by a tip about wearing darker blues now in Sept, inexplicably put on a tie from Chiang Mai for today’s character study.

PS glasses still need adjusted. So tired.

Made my busswitch… sounds really basic as im a super transit rider in many countries but, our area has 3 different bus franchisees providing service in various areas, and all of the signs are only in Japanese characters (and shockingly) but a little opaque to slow-minded like me.

By far the best of the three is the one that comes out to our home (called Uno bus) with beautifully maintained vehicles, great Wi-Fi, power outlets, comfortable seats… This one is a little bit more “standard issue”

Re above: That meant to say “unshockingly” because of course it’s written in Japanese because this is Japan duh but still, having the ABC version (especially on the special green bus designed to do a tourist loop) would be a super easy quick useful addition.

K, at hospital. no snaps permitted (obv)

Snack in between the various check points, gotta not fade

yes a photo of a konbini snack to keep energy up for injections etc

3:55PM Good news is: survived the *multiple medical checkpoints* of the hospital, including all the checkout/billing/insurance desk + got 13+ prescriptions submitted including some new medications (muscle relax, migraine) and will be delivered by courier.

3:58PM / Liberal Cafe: Got late lunch & siphon coffee at “Liberal” where boss calls me Mr Friday & exchanges postcards / ¥1250 for daily set minus rice plus coffee – shared a book of paintings from Shikoku & Germany

When i arrived at Liberal café, the boss says “oh it’s Mr. Friday” and I felt like a regular.

I might do a super low-key art exhibit there too (postbox paintings) will totally let you know and we will do an “opening” even if it’s just two of us with siphon coffees.

4:00PM / Bus switch: Caught bus and at Okayama station, oh my goodness, there are foreign tourists, wearing shorts, talking loudly wearing, backwards baseball hats & eating ice cream. It’s all so strange! :) {no one comes to Okayama}

4:33PM / Home: Oh im home & in bed / thanks for hanging out with me on my journey… Helps the anxiety tell my story along the way

Bonus / Data: geeky medical imaging fun delivered by app

The data in these clumsy screenshots doesn’t necessarily need interpretation by we laypersons but just the fact that they “exist” is fascinating. Dozens of images, and all sorts of blood test results all of the Japanese is still beguiling and difficult to translate medical terms of course but still… The fact that it exists is very pleasing

Briefly: blood flow to my frontal cortex of brain is insufficient which impacts executive function (i get confused and non-verbal) and easy weakened but spinal fluid does not seem to be “leaking” although there is a clear impingement on cervical spine (i think result from car crash Jerome Idaho, 1988)

MECFS study: Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

“The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age]…”

Oh, and: Importantly: The master of my little secret kissaten trimmed these three beauties off a tree to see me on my way / he said yuzu but look like sudachi… but I’m not all that smart about these matters. Regardless bound to be tangy.

[Fast forward] Sept 4: Today on “tidying up with daveo” comes a variety of tasks involving: figuring 日本語 characters to identify medications and then, a “Laverne and Shirley-esque” (or “I Love Lucy” if you’re older) series of manual tasks, scribbling letters, tearing packets & sorting into bins #mecfs

The tasks are way quicker and easier now as most of the medications are bundled into “morning, noon, evening, bed” packets by pharmacy & TCM are in numbered sachets // although there are always situational outliers and new meds to test out before putting into the routine #pwme

Pod and Book addendum

Healing: topsy-turvy hospital day (notes)

Memo: Hospital day yesterday, waking up completely wiped out but felt heard by the doctors, a lot of fluids went out and more went in, referrals for some complicated/intricate tests and evaluations. Unfortunately, (for me) my doctor got a “great opportunity” to move to Kyoto University Hospital #MECFS

No photos allowed in hospital (fortunately)

Summary: batch of new tests today, adjustments to medication, appointment for blood flow to the brain test and referral to a specialist check possible residual impact for multiple concussions. In other words “just a normal day in our lives, isn’t it?“

Too much info:

IV injection combination adjusted (neurotrophin plus various B vitamins, C vitamins and “trace” minerals

One recently prescribed medication to deal with cervical spine pain (from dislodged disc pinching nerve) discontinued due to negative reaction

Blood flow to brain scan test scheduled for early August (common conundrum amongst folks with my illness, makes standing up difficult and prone to fainting and in my case at least, debilitating headaches especially during changes of air pressure in typhoon season

Four (or five) medications (two of which are basically vitamins) which I’m tolerating well, increased

Two medications which I am now only using situationally rather than regularly, appropriately decreased

Two of the five traditional Chinese medicines increased in frequency, the other three remain the same. Doctor pointed out pulse is stronger/“less thin” and abdomen is improving (less pain and tension) and tongue is looking healthier / FYI: pulse, tongue and in my case abdomen are the three primary diagnostic tests for Kanpo

Five vials of blood drawn for various hormone/chemical/vitamin/mineral levels testing (thanks Theranos :))

Referral to a brain/neck injury specialist in the allegedly charming town of Onomichi, where a rather legendary doctor keeps his practice rather than moving to the “big city” which is quite refreshing. My kindly doctor was thoughtful enough to send me there rather into the gray sturdy chaos of Osaka. Bless her heart. No date yet but may be can make a little bit of trip out of it to see the town with so many people adore / Maybe I won’t leave and set up an advance camp for our family

Had frank discussion about mental health issues but not just about “general hopelessness and/or PEM” but rather brain hormone levels (serotonin, dopamine, serotonin etc.) plus effects of various brain injuries, and efficiency/workingness of various nodes and glands (no I did not mention the pineal gland specifically because didn’t want to act too much like a DMT seeking New Age hippie ha ha) #InsideJoke #NotReallyFunny

Asked for a referral to English-speaking psychiatrist who won’t “just talk“ and/or definitely not SSRIs.

Unfortunately my kindly Dr has also taken at “great and prestigious new opportunity” at Kyoto University Hospital, once again proving my theory/rant that Tokyo and Kyoto suck all of the oxygen out of the rest of Japan.

There was a very nice formal letter explaining all of this but truth is I am terribly disappointed as she was extremely empathetic, open to new ideas, read the articles i provided, and spoke good English which is super helpful for medical stuff. A real kick in the gut for me – super disappointing and nervous about her replacement. I cried a little bit in her office and there’s no crying in Japan

Also: Set up automatic delivery with the pharmacy so I can start to come to these appointments by myself by bus (and not haul for shopping bags of medications home with me on the bus) because it’s becoming wife’s busy season so I need to be a little bit more independent and cognizant of her time. (I take care of the dishes and laundry etc. at home, doing my part)

Now at a quirky café to replenish as I am somewhat white as a sheet and fading. {I think I mentioned this café in a previous dispatch, noticed a cute post box from the outside and the name “liberal” / have now visited twice, noted many cat tchotchkes scattered around – learned the friendly fellow took over from his dad who started it 47 years ago, the wife cooks one magnificent lunch set choice per day, the set above cost ¥950(!) + I spend an extra ¥300 for a coffee to go with the hot tea and the cool water for a triple beverage fun / I will go here every time for recovery after my hospital appointments, especially when traveling so lol when I tend to “forget to eat” which isn’t a good idea / I did my “card game“ in which he chose two of my postbox friendship cards which he quickly put on display, what an honour!

I guess this has become my diary entry for today. Thank you for reading.

Update: the whole pharmacy routine worked out really well as my medication‘s are not delivered by courier the next day and my morning, midday, evening and bedtime medications are organized into little packets, which match along well with a little sachets of traditional Chinese medicine.

Healing: rocking hospital visit (plus green kei-truck & ramen)

(Brief) Diary:

Rocked Okayama Uni hospital visit with 4 check points (#mecfs specialist, TCM kampo, IV cocktail & admin tasks)

Thanked the doctors so much for what they’re doing for this weird illness and yes, there’s suddenly so much more research going on. The revolution continues for the missing millions.

+ saw sweet green kei-truck; ate ramen waiting for scrips; & spotted cute Indian/Nepali resto for next time

Came home, long hot bath, now in bed, much medicines to organize. I’m trying…

Bonus: the Ramen shop from the outside, kind of classic