Monday, January 16, 2012

A Short Note on Payment

Medical costs here in Japan are quite reasonable, but it can be a challenge to get an estimate prior to surgery. It was a huge challenge for me. I think a part of this was the language barrier, some cultural differences and the fact that the health insurance system here is so radically different from any thing I was used to at home.

When I scheduled my first surgery (which I eventually canceled), I attempted to get an estimate of the cost. First, I asked my doctor, who said she had no idea. That was understandable. I asked if she had any idea who I should ask, and she looked a bit bewildered at the question and said maybe try at the payment desk. So I asked the lady at the payment desk who said she couldn't give me an idea of the cost of the surgery until after they were finished. Assuming I had made an error in Japanese, I went to my Japanese friend Mie and asked her specifically how to go about asking for an estimate. I wrote this phrase down and went to the hospital again to ask at the payment desk for an estimate of my surgery costs. She gave me the same response, that she couldn't tell me until the surgery was done.

At this point, I was beginning to get a bit (very) upset. In Japan, your medical insurance covers about 70% of your medical costs. The remaining 30% you pay on your own. This meant that if my surgery cost was about 100 (まん/man) (about $10,000) then I'd be responsible for 1 (about $1,000). If my surgery cost was 300 then I was paying 30 (about $3,000) etc. You pay for all of your hospital costs before you leave the hospital. Naturally, I wanted to at least have some idea of how much money I needed to save BEFORE they did surgery on me. My inability to get this information, in conjunction with other personal factors,was a significant part of the reason why I ended up not having the surgery when I originally scheduled it in March 2011.

Once I knew that my tumor was rapidly growing and that watchful waiting was not going to be a successful policy, I once again attempted to get an estimate of cost. I was a bit more forceful this time, knowing that I only had about 3 ½ months to come up with the money, further complicated by the fact that I had spent all of my savings on my visit home to the States. I discussed the problem with one of my Japanese coworkers and friends who suggested that the next time I go to the hospital that I should ask to speak to the “social worker”. I did this, and after being told to wait a few minutes, the nice woman at the payment desk sent me to the social worker's office.

The social worker was a very nice man who in the course of 20 minutes completely confused the heck of me and reduced me to tears. I believe cultural differences played as much of a role in this as the language barrier. I went into his office with one question for which I expected a simple answer:

Question: “How much money do I need to bring to the hospital in order for you to do my surgery?”

Answer: “X amount of yen” unless there's something unusual, in which case it might be “X yen” more and we'll expect payment in THIS or THAT way (after X number of days/weeks/months, etc).

That's not what happened. Instead, he put a sheet of paper in front of me that was written in Japanese with multiple tiers of money, asked me a bunch of questions I didn't understand, proceeded to give me the same surgical instructions I'd received from my doctor (except because I was listening for an amount of money in Yen or for information directly related to costs, and that's not what he was telling me, I had idea what he was saying), and after throwing around some very big numbers (this is where I started crying) told me to come back with someone who spoke better Japanese.

I left his office with the idea that I'd need to come up with a minimum of 30 (about $3000) in 3 ½ months. Needless to say, I was heartbroken. Thankfully my wonderful friend Mie came to my rescue. I was still on summer vacation at this point, and she volunteered to go to the hospital with me the next morning and translate what the social worker had said. She'd also had the same surgery (laprascopy, but at that point that's what I thought I was having too) three years earlier and it had cost her about 11 , a far more manageable figure for me.

When we went back the next day to see the social worker, Mie's translation for me made all the difference. It turned out that the first few minutes of the conversation (as I said before) was the social worker restating what my doctor had told me about the nitty gritty of my surgery process: what kind of surgery I was scheduled for and how long I was supposed to stay in the hospital. Next came that piece of paper with all of the numbers. It turned out that the paper was saying that depending on my income (which I was able to give him), the most that the hospital would be able to charge me in a month was 8 plus hospitalization, which was 1% of some ridiculously large number. In the case I'd need to be in the hospital for 11 days (as with laparotomy, which I'd been hell set against at this point), the most they'd likely charge me was 11 .

Finally, I had the piece of information that I needed! I needed to save 11 for this surgery! Yay!

When I speak of cultural differences as well as the language barrier playing a role in my initial confusion though, I'm mainly referring to the order of information. The piece of information I wanted (how much would the surgery cost/how much money was I expected to bring) came at the every end of the ten minute discussion. The social worker felt that I needed to know everything else related to the surgery, hospitalization, etc, before getting me to the answer to my question. While the knowing why was important to me, I was far more interested in the number. If I'd had that 11 up front, I'd have been perfectly happy to walk through any explanation he wanted to give (and maybe understood it better because I wouldn't have been so confused/terrified/upset).

This was the same thing that happened to me when I went to buy my first cell phone here. (you can look back at that blog entry). All I wanted was a phone that did email and made calls, but I couldn't even get there without knowing how many countries the phone worked in, data packs, the color of the phone, etc. In both cases, I was missing key vocabulary that would allow me to better follow along with the conversation. This is absolutely true. But also in both cases I was being given information out of order from how I expected it and this threw me at least as much. It's something to be aware of as a general rule in Japan.

One more critical mixup that happened for me in regards to payment has to do with the Gendogakuninteisho form which lets the hospital know the maximum amount they can charge you depending on your income. I had initially requested the form 3 months prior to my surgery, but that was too soon. I thought I was then told to request this form from my company within 10 days of the surgery. This was a mistake because the form in question doesn't actually come from my company. I have to ask my company to ask the Shakai Hoken (national employee insurance) office to mail me a form in order to take with me to the hospital. I would have been much better off to request this form earlier than 10 days before the surgery or exactly 10 days before the surgery. Instead, I remembered to ask for the form 4 days before my surgery, and didn't receive it until after I entered the hospital. Luckily the hospital simply needed to have the form from me before the end of the month (and Mie picked it up from my mailbox) but I was concerned for a day that I would have to reschedule my surgery because without this form there would be no cap on what they charged me.

I was very lucky with what I was charged in the end for my surgery, and I think this may be in part because I asked to be released from the hospital early. Instead of paying 11 as they'd estimated, I only paid about 9 . This was a savings of 2 (almost $230—yay!) which I promptly spent on eating out at restaurants and other frivolous things that I don't regret one bit.

I will next blog a bit about my recovery at home and returning to work. In regards to the hospital experience though, this about wraps it up :)

Monday, January 9, 2012

Happy Birthday to Me (aka: Intake, Surgery and the Hospital Experience)

I was admitted to the Toyota Kosei Byouin on December 21st, 2011, my birthday. (note: the world is due to end next year on my birthday...can I catch a break?). My surgery was scheduled for the next day, but in Japan they admit you a day early in order to monitor you, give you laxatives and enemas and generally get you familiar with the hospital experience.

When I was first told I'd have to go to the hospital a day early, I was less than thrilled. At home, you go to the hospital right before your surgery, and the doctor just has to trust you don't want to aspirate on the table and thus will stop eating and drinking at the appropriate time. (stopped food after dinner, roughly 7pm, and stopped drinks after 10pm) But there were some solid benefits to the early admittance though. First, you get a feel for what being in the hospital experience is going to be like before the mental and physical stress of surgery. You take your first shower in the hospital, so you know the layout of the shower room (and anticipating severe pain, I plotted where and how to put my bath products in order to keep from bending more than necessary, which was emotionally comforting but ultimately unnecessary.) Also, while being given laxatives and an enema is no thrill, (especially the enema) it was very good that they cleared out my entire bowel before surgery as it made the recovery easier.

Lastly, you get to chat with your surgeon about the surgery and concerns. In my case, I had to tell Dr. Hariyama that I wanted laparotomy (open surgery). Her eyes widened a bit in surprise when I said this and she blurted out, “are you sure?” which considering how hell bent in laparoscopy I'd been makes perfect sense. I said I was sure. She asked if I had any concerns about the surgery and I said I had a few questions about the recovery:

Vash: When can I start running again?

Dr. Hariyama: Running?! Maybe three weeks?

Vash: When can I start cycling again?

Dr. Hariyama: Cycling? Well, about three weeks.

Vash: When can I start drinking again.

Dr. Hariyama: As soon as you're released, but only a little. (chotto).

She rattled off the last with the absolute confidence of someone who has answered the same question many times, which gives you an idea of the cultural importance of drinking here, if you hadn't known already.

You have to bring a good deal more stuff to a Japanese hospital than to an American one. You bring your own PJ's because after the first day or so you get no gowns. (this was perfectly fine with me). You need one shirt that opens in the front for the day after surgery but after that t-shirts and sweats are fine. I also brought my own silverware (unnecessary), towels, tissues, period supplies (you get some bleeding after the surgery, but in my case it was barely spotting), underwear, etc. Also, as my hospital had internet, and so I was able to bring my computer, my own LAN cable to connect to the internet (WIFI is not common here), TV shows and movies (that I hardly watched, but it was great to have), and of course all of my various electronics chargers. I brought a multi-socket surge protector in case there weren't enough outlets. I was very glad I did this.

Another very important thing to bring to the hospital that I can't stress enough is earplugs. In a Japanese hospital, you are sharing a room with up to three other people at a time. Everyone is very polite, but that many people in a small space is just noisy! My first night in the hospital, before my surgery, one of my roommates who had had surgery previously was in pain and kept rolling over and groaning and calling for the nurse. Frankly, as I was anticipating surgery the next day, this was less than reassuring. Even though I'd taken the precautionary step to pull an all-nighter on the night of the 20th (Karaoke with Helen), I'm sure that I probably wouldn't have slept well on the 21st if I hadn't had the earplugs. They also came in handy after I woke up, and I slept most nights with them in.

One more very VERY important thing to bring is your own Bran Flakes and fruit. Also, your own fruit juices and Rooibos (no caffeine tea). The hospital diet is not very high in fiber, one of my few (but serious) complaints about the experience. They are however really cool with you eating your own food, and I recommend you bring some. Later, I'll go into a lot more detail about this, but the short story is drink water (not the green tea) and eat lots of fiber. You're going to need to bring that on your own. I didn't get this until a few days into my stay, and I suffered for it.

The morning of my surgery, I was woken up at 7am. I took a shower first. Then they told me I had to repack all of my stuff back into my suitcase. I had no idea that they were going to do this, and I'd spent the previous day setting up my room exactly the way I wanted it for the next 10 days so I found this to be highly frustrating. The nurse helped me repack (which was sweet) and then it was the waiting game.

They put an IV in me later that morning, and started me on IV fluids. I had a couple of hours before the surgery, so I called all of my relatives and a few friends (Steph) in the States using the Skype application on my iPhone. Sachiko-sensei arrived at 11:30am. My surgery was scheduled for 1pm. I chatted with Sachiko-sensei for a bit, and basically just waited around. I wasn't super nervous about the surgery, more in a state of numb calm. Most of my fear came from making the decision, but once I knew what I was doing, I accepted what was going to happen and had minimal fear. I don't even think they gave me an anti-anxiety, though I'd probably have taken it as a precaution if it had been offered. I'm glad it wasn't.

They came to get me for my surgery at 12:55pm. (When they say you're having surgery in Japan at 1pm, that's what they mean, exactly) I walked to the Operating Room (OR) with my IV. Sachiko-sensei stayed with me until I passed through the doors of the OR. Honestly, the OR experience was even a bit of fun! I had been introduced to one of my OR nurses the day before. I met the second one, also named Yuko, in the O.R. “Doburo (double) Yuko,” they both proclaimed cheerfully, and we all laughed. At this point, most everyone spoke exclusively Japanese, but it wasn't complicated Japanese, and the whole staff really tried their best to use what English they had to help me do what I needed to do. I also had a very good idea of the routine and what was going to happen from my and Sachiko-sensei's discussion with the anesthesiologist two weeks prior, so I wasn't confused at all.

I walked into the operating room itself and climbed up a small staircase to my operating table. Until now, my experience with operating tables had basically come from working at the veterinarian and watching episodes of House. This was completely different from either of these things. The table itself was heated and padded. There were a TON of people running around doing various things. Also, above the table was one of those very bright lamps that looks like a huge five leafed clover from an alien abduction film, you know, the kind they use at the dentist. The bright light was off, and I assume not turned on until the surgery started.

Once I was on the table, it was time to insert my epidural. An epidural is a thin tube inserted into the spine into which anesthetic is given. The anesthetic numbs your entire abdominal area, though I'm not precisely sure how this works as my epidural was in for two days and I felt my stomach at that time with no problem. I just didn't feel pain. Epidurals are incredibly safe, though in very rare instances you can get clots which can lead to severe pain and paralysis of the lower body. If you have severe pain while getting an epidural, it's essential to let someone know immediately so they can clear your clots so you don't have paralysis. At least that's what the anesthesiologist told me.

I was totally terrified about being awake for for my epidural, but it turned out to not be that bad. You have to lay on your side and bring your knees up to your chest and stay VERY VERY still for them to insert the epidural. Once I had done this, my anesthesiologist and the other staff got into a rapid-fire discussion in Japanese about how to relay a certain instruction to me in English. This happens so much in my life (and often even if I say I understand the conversation that is happening in Japanese, the discussion soldiers on without me until an English word is achieved) that I found myself instantly amused. Eventually, someone in the room who did speak excellent English (one of the techs/nurses, don't know) told me to hold my legs (which I knew) and stay still. The anesthesiologist followed up immediately with a triumphant “relax!” which had me instantly laughing because I couldn't think of a less relaxing situation at that point.

My laughter set everyone else in the OR off as well, and everyone was laughing along with me. The irony of the situation actually did make me relax, so when they inserted the tube I was very still and reasonably calm. The tube went in with a weird tickly, funny feeling. I did have a mild blossom of pain in my lower back, which I immediately told the anesthesiologist about, but it went away immediately and I think was just him moving the tube in my spine. Once the was in and taped down, I didn't feel a thing. They had me lay on my back (a bit nerve-wracking), put a mask over my face and told me to breathe deeply.

I did this for a bit, and then lost consciousness. When I woke up, I was in the HCU. We don't have HCU in the States but it seemed like an equivalent to ICU, except exclusively for post surgery. The anesthesiologist had told me that when I woke they would remove the intubation tube from my throat but thankfully the tube had been removed before I reached conscious awareness. When I woke, everyone asked if I was okay (daijoubu) and I realized that I was literally shaking with cold. Sachiko-sensei was with me at this point. She asked how I was, and with chattering teeth I managed to say “samui” (cold). I was really out of it, and though I know Sachiko-sensei speaks fluent English, I had it in my mind that if I needed something done I had best use Japanese so I did. She said (in English) that she had the same problem when she came out of surgery and asked the nurses for an extra blanket. When I was under two blankets, I was immediately warmer. They put an oxygen mask over my face, asked me if I was in pain (not at all) and then Sachiko-sensei said a prayer over me and she had to go to call my mom and let her know I was okay.

I said I was fine and thanked her for helping me. It was about 4:30 pm in the afternoon at that point. I'd been told that I was going to be in HCU until 11am the next morning. This seemed like an interminable time for me before I went into surgery but I'd been told I'd be too out of it to really notice the passage of time. This was both true and untrue. I drifted in and out of consciousness for a while. Because I didn't have my glasses on, I had no idea how to tell what time of day it was or how much time was passing. The nurses came and went, and I sort of watched their blurry forms as they bustled back and forth, checking vitals on the four other patients that I could see in the room from my hospital bed.

After a bit of waking and sleeping, one of the nurses came by to ask if I was hot. I said no, but then as soon as she left, I realized I was baking. I called her back when she passed again (I had the nurse call button in my left hand but didn't want to use it for some reason.) She took one of my blankets. She asked if I wanted to have the second blanket taken and replaced with a thinner blanket. I was suddenly afraid that if I lost all of my blankets, I'd start shivering again, so I said I was fine, but as soon as she left, I realized I was still incredibly hot. Also, the oxygen mask over my mouth seemed to be smothering me, so I tried to adjust it. I broke the tie on the mask trying to do this, and I wanted to jump out of the bed and leave but I was afraid I'd break my stitches so I stayed put. I hit the nurse call button and when the nurse came I asked her to take the blanket and also explained I'd broken the O2 mask. She said that it was fine and that I'd gotten a bit “okoteiru” (angry) and I just said thank you (all in Japanese). Later, I also asked for a pillow (I hadn't been given one, though the bed adjusted) and the nurse gave me a very nice soba filled pillow. This made a world of difference for my back and shoulder pain.

After that, I drifted. Occasionally a nurse would come by and check my vitals and ask if I was in pain. I wasn't. In fact, I felt so fine (aside from fatigue and general vacuousness) that I wasn't even sure I'd had surgery until one of the nurses stopped in to check my incision the next morning. Whenever a nurse popped over, I'd ask the nurse what time it was (no glasses meant the world was mostly a blur). Time moved both quickly and very, very slowly. I wasn't nearly as bored as I thought I'd be, but I also really wanted to leave this room. Eventually, 7:45am came. I knew this because the nurse came over with a sippy cup full of water and said that I could drink it at 8am. I asked what time it was and she said 7:45. I asked if she could let me know when it was eight and she point to the clock behind her on the wall. This was a white, circular blur to me, but now that I knew it was there, I could squint at it and roughly make out the time.

At 8am, I drank the water, mostly for the entertainment value. At 10am, they said that I could walk. I was very excited about this, both because I wanted to get out of the bed and because I really wanted my glasses back. It turns out my glasses were on the table next to my bed, in a box, but I couldn't see them so that didn't matter. The nurse put my glasses on my face and then magically, I could see! We dialed the bed up so that my back was more upright and lowered my legs. Then I had to scoot to the side of the bed and put my legs to the floor. I was pretty worried about if this would harm my incision, but I followed the nurse's instructions and felt fine. I put my feet on the floor and with the nurse's assistance and encouragement, I was upright. We walked about 12 feet or so to the bathroom, turned around and walked back. I had no problem with walking and was in no pain. When I sat back down though, I felt a bit cold, sweaty and dizzy. The nurse assured me this was normal and that she was impressed with me for walking so well and with such energy. I sat back down, laying by head against the back of the bed, drank a bit of water and the dizziness quickly passed.

When 11am came around, I was ready to return to my room. The woman in the bed next to me was returned to her room, but I had to wait an extra 15 minutes which seemed like a very long time to me. They put me in a wheelchair, piled my stuff on my lap and then we wheeled out to the elevator and back to my room. Sitting in the wheelchair made me dizzy again, but this subsided. My suitcase was waiting for me in my room. I'd put my iPhone in the outside pocket, so I asked the nurse to hand me my iPhone and charger. I felt really good. No pain and pretty energetic. I immediately updated Facebook, texted my best friend Steph through Skype that I was alive (I'd asked my mom to do this when she heard from Sachiko-sensei but I knew she'd have gotten that call from Sachiko at 2-3am USA time and would probably forget), and then got out of the bed and walked to the cell phone area to use Skype to call my mom.

In the hospital, because you share a room with 1-3 people (mine was a 4 person room but I only ever had one roommate), it's a rule that you have to leave the room to make calls on your cell phone. You can text and use the internet all you want in your room, but calls are done in what looks like a pleasant conference room across the hall with a vending machine. I had no problem with the walking. At this point, my dizziness had subsided and I was perfectly happy to do this walking and as much other walking as feasible in order to help improve my recovery.

Now for a bit of a digression about the importance of walking post surgery:

In preparation for my surgery, I had scoured the internet for any and all information on how to best recover from abdominal surgery. This included message boards, forums, blogs, medical websites, and sundry. From everything I'd read on having abdominal surgery, including a really detailed set of forum messages at, the most important thing you can do for your recovery is to walk as much as possible. Exercise is key to getting your body back in action. One woman who was a marathon runner had spoken of doing about an hour a day of walking in the hospital, as well as getting up and down stairs in 2-3 days after surgery, and basically trying to be as active as possible (within reason). As a result, her recovery was very fast, she had minimal pain, and was quickly able to return to her life's activities. (though it did take her a bit over a month I think to return to running). She was very good about listening to her body and what it told her to do, but she also didn't let fear of having had surgery prevent her from doing what she was capable of doing.

I tried to model myself both on her as well as others who had had successful recoveries. I wanted to be careful, but I also wanted to be as active as possible. Things like being encouraged (required) to leave my hospital room in order to make cell phone calls helped contribute to this process. As the days passed, I began walking the hallways as I talked on my cell phone to relatives and friends, so that I was exercising while I talked. Considering I was making an average of an hour or more of phone calls daily, this really helped me get low key exercise as I talked. And if I got tired, I would just sit for a bit on one of the benches in the halls before starting again.

Another thing which I did while in the hospital which I think helped speed up my recovery was to find an empty room (it was a room for washing hair but nobody ever used it) and sing for about a half hour 1-2x/day. I did this starting from the second day after my surgery. (Dec. 24th) I was a bit worried that someone would kick me out or complain about my singing, but nobody did, thankfully. I'd take my iPhone into the room with me, put it on speaker (low sound) and sing along to the music. It was like my own personal Karaoke booth! I'd also bounce along to the music or occasionally pace, which kept me in motion. Apparently deep breathing is very helpful to your recovery (and singing requires deep breathing). I missed this in my pre-hospital reading, and the singing was more for my sanity than because I thought it would be beneficial to my recovery, but I noticed that after 15 minutes to a half hour of singing that I felt better, happier, and that if I'd been in pain (mostly gas pain) this pain was gone. The pain relief lasted for at least an hour. I highly recommend adding singing to your post surgery recovery as a result of this. It's also fun!

Digression finished.

I called my mom and had the difficult task of letting her know that I'd chosen to have full abdominal surgery. Luckily, I was in such good shape that my mom knew I was okay just from hearing my voice. We talked for about an hour, where I told her how well cared for I was at the hospital and how everyone had been so ridiculously nice to me. I wasn't in any pain, mainly due to the epidural which they left in my back for two days from my surgery. I had to wear the medication bottle on a bottle hanging from my neck. I felt a bit uncomfortable about this, mainly worried that something with the swinging or movement might mess with my back, but this was a totally unfounded worry. I'm not sure how the epidural administered the painkiller, but it worked. I also had IV painkillers which they kept giving me for about 6 hours after they removed my epidural.

I also called my best friend and talked for another half hour. Then I went back to my room, dug through my suitcase for my netbook laptop computer (I should have waited for the nurse for doing this but I felt fine), surge protector, hard drive, and LAN cable. I set my computer, internet and hard drive. After getting all of this together, I was a bit tired, so I put on The Little Mermaid and went to sleep. When I woke, I walked down to the cafeteria to get something to drink (I suppose I could have called a nurse but I felt fine and I wanted to walk) and to do some drawing (I had promised many of my friends to draw them holiday themed kittens while I was in the hospital so I carried my art supplies with me). When I got to the cafeteria, Sachiko-sensei was already there! Turns out she'd popped in to visit, seen me sleeping, and went to the cafeteria to wait me out. We chatted for a bit. I told her how grateful I was for her help and how good I felt. She seemed surprised that I was as genki as I was (I was a bit surprised too actually) and we talked for a bit more before she went on her way.

I went back to my room for dinner and started rewatching 3rd Season of Buffy. In the evening, my friend Issei visited me and gave me an awesome present! I went to bed around 10pm.

The next day was Christmas Eve and I was expecting a lot of visitors. Before I went into the hospital, I made an event on Facebook letting people know what hospital I was in, how to get there, and when visiting hours were. Expecting to feel really awful on the 23rd, I told people to visit me from the 24th. I was also able to update all of my friends through Facebook through the week about how I was doing and post pictures of people who had visited me.

Here is the link to the event if you want to try doing something similar:

Note: The above event ended in December, but in order to make it public for this blog I had to change the end time.

Another thing I did to make the experience more fun was to make a paper Christmas Tree and bring lots of art supplies and materials to allow each of my visitors to make their own ornament for my tree. I took a photo on my iPhone of Dr. Hariyama and drew her as the angel on the top of my tree. I gave her this drawing as a Thank You card when I was released from the hospital.

I drew this on the 21st (day before my surgery) and was really proud of how well the drawing came out, and the nurses were really impressed too. My nurse said I had gotten Dr. Hariyama exactly right and asked me if she could bring in other nurses to look at my drawing as they were really curious. So for a bit I had a stream of random nurses coming to look at my tree, which was really fun!

My guests also really REALLY got into decorating my tree, which was so exciting! Everyone gathered around the art supplies and made really creative and beautiful ornaments. I asked everyone to sign their ornament so I knew who had done what. Within days, my tree was overflowing, and ornaments spread out over the wall. (I had asked my nurse where would be an appropriate spot to tape the tree so that it didn't damage the hospital wall, and it was okay to hang it right over my bed, much to my joy.) My friends Mie and Haruka even brought some of their own supplies, including beautiful origami paper which they used and then donated to the project.

Having spent a lot of time visiting people in hospitals, creating an art project for my guests was very important to me and I highly recommend doing something like this for anyone who is anticipating a long hospital stay. (you can do flowers in Spring, leaves in Autumn, surfboards in Summer, etc). Normally, when you visit someone in the hospital, especially if there are a lot of visitors (who may not know each other), everyone kind of stands and/or sits awkwardly around the hospital bed. When conversation flags, the poor patient feels a bit like a zoo exhibit. I really didn't want this to happen to me. I wanted everyone's experience of visiting me in the hospital to be an enjoyable one, and for there to be a minimum of awkwardness, especially because I'd invited half of the free world to share my hospital adventure. I had guests who spoke minimal English and those who spoke minimal Japanese. Sharing a common project created a sense of community among strangers and gave us all a common topic to talk (or gesture) about. It also made me very happy to look at my tree and know that there were so many people here who really put the effort into showing how much they cared about me. At night, I would look up at my tree and smile. It also gave me something to chat about with my nurses besides my temperature and bowel problems. This was a win for everyone concerned.

Another great thing which was really awesome was that my friend Helen brought a deck of cards. We all played hours of Rummy and Gin (500 Rummy) which was really, really fun! In fact, everyone enjoyed playing cards so much that we brought the cards to the bar on NYE and played 500 Rummy while waiting for the countdown to midnight.

Christmas was ridiculously fun! First, it snowed. Looking out my window at the beautiful snow made me instantly happy, especially because I didn't have to shovel it.

The next gift was that they removed my IV so I could shower again. I could also go up and down stairs. I climbed down and up five flights in the early morning, did three more later on before my shower, and another four flights after lunch, At this point, I was taking oral painkillers at request. I wasn't in a whole lot of pain, much to my surprise, so I used about 2 a day, as opposed to the four that I was allowed to have. I also had many, many visitors! This was in part because Christmas in Japan as a foreigner is a bit dull until the evening when the clubs open. So visiting me in the hospital and seeing other fun people was a huge step up from sitting in ones own tiny apartment watching movies. My hospital room became a Christmas party, with people chatting, making ornaments and generally having a good time. I also received a ton of great fruit and cookies! The fruit was especially welcome!

Note: The below section is going to go into a fairly detailed discussion of Japanese hospital diet and my struggles with constipation, and a related minor medical mix-up, so you've been warned.

By the 25th, I was having a lot of gas but no bowel movement. Constipation is a very common side effect of abdominal surgery. The anesthesia and trauma of surgery slows the movement of your bowel, leading to constipation. This is problematic because straining to make a bowel movement can disturb or break your stitches in addition to being painful. Almost all of my post-op pain after the first day was due to constipation and gas pain. Because of this, it's VERY important to eat a high fiber diet including lots of bran, fresh fruit and veggies, brown rice, beans, etc. ASAP after surgery and in the following months. Also, you want to avoid caffeine or anything else that is dehydrating. This includes Green Tea, which in Japan is seen as exactly the same as water. So my nurses thought I was doing just fine drinking 5-6 cups of green tea daily, but in fact this was not nearly as helpful as the same amount of water. I knew this about Japan, but I hadn't been thinking when they told me this (wanting a hot drink I guess), but on the 25th I cut all the green tea from my diet and drank water, fruit juice, and the Rooibos tea I'd brought with me from home only.

For me, the hospital food was not meeting the fiber standard, and I think my body was letting me know this in various ways. When I'd arrived at the hospital through the 23rd, the food had tasted pretty good, as time went along, the food began to taste worse the the point where I was only eating the vegetables and (when lucky) fruits. By the 25th, the smell of the rest of it made me nauseous. This is because the diet in the hospital, which was traditional Japanese, is not very high in fiber, certainly not as high in fiber as I'm used to eating. Every meal includes processed white rice (mostly empty calories and not recommended for constipation), a fish (no problem), sometimes Miso Soup (ok) and some kind of vegetable. The ratio of vegetables to everything else was less than 1/3rd, and fresh fruits were given very rarely. On the 25th, I asked my friend to bring me a box of Bran Flakes and milk. I replaced the rice with bran flakes (even though it created some strange flavor combinations) and ate a lot of fruit. For Christmas dinner, I ate bran flakes and fruit. The following morning the same, with a little fish for protein, and then for lunch the vegetable part of the lunch and you guessed it, more bran flakes.

I was really, really tied up because generally one bowl of Bran Flakes will get my bowels moving if I'm having constipation, but by the afternoon of the 26th, I'd eaten half a box and still nothing. My friend Polina, God Bless her, had given me a bento box of salad which I ate that night for dinner with more Bran Flakes and fruit. That night I dreamed of avocados, spinach, wheat soba, and brown rice (why they didn't give us brown rice in the hospital I HAVE NO IDEA). I was losing it a bit at this point actually. I felt fine; I couldn't eat the food, and I wanted to go home.

That night, one of the nurses woke me at 3am to ask me if I'd taken my pain medication and if I was in pain, and I was like “no” but after she left I couldn't go back to sleep. I got up and took my iPhone to go take a walk around the hospital. I think the nurses were a bit confused, but they let me wander as long as I told them when I came back. I was at this point seriously considering just going back to my apartment. I was off all oral medications except the pain medication which I was mainly taking for gas pain. I walked all over the hospital, and finally settled into a random bathroom and started calling people in the States.

My friends managed to convince me not to run away from the hospital, and when I went back to bed an hour later, I laid down and thought on the situation. I would have asked for an early release at that point, but I was waiting for my friend to pick up a particular form from my apartment which said the hospital couldn't charge me more than a certain amount for my surgery. Due to a mix-up, this form had arrived at my apartment late which meant that I hadn't been able to take it with me to the hospital when I arrived, but as long as I gave it to them before I left it was okay. I seriously debated going back to my apartment (it was only a half hour by train) and getting the form myself but I was afraid I might get overtired and fall asleep on my futon, arriving back at the hospital hours later to find a bunch of panicked nurses and police officers looking for me. As I lay there, I realized that my only complaint about the hospital experience at this point for me was the food, and because one of the schools I work at is in the area of the hospital, I knew the area well enough to know there was a grocery store about a block away. I decided to take my large pocketbook, go to the grocery store, buy the food I wanted to eat and prepare it in the hospital microwave.

That morning, I used my dictionary to look up the exact name of the medications I was taking, and realized that what I'd thought was a laxative they were giving me was actually an antacid. I looked up constipation and asked specifically for a laxative and they gave it to me. I have no idea why they hadn't given me the laxative earlier since I'd clearly been concerned about constipation, but oh well. The laxative was supposed to start working in the evening, but my all bran marathon kicked in about five minutes after I took the laxative and I had a very good sized bowel movement. This put me in a very good mood for my shopping experience. I also was off all pain medications at this point, thanks to my nurse who told me to try going longer without the pain meds before taking them. I was mainly taking them because of the gas/constipation and fear of being in further pain, but I didn't really need them. I was very grateful to be off all medications at this point, though it also baffled me why they were continuing to keep me in the hospital.

End of bowel talk!

There was a garden in the hospital, so I got my coat and sweats on and at 10am told the nurse I was going for a walk in the garden. I said I'd maybe be about an hour and I left my cell phone number on the table in case someone needed me. I waited for 10am specifically because that's when the new patients were admitted, and it was really quite busy. I walked the block to the grocery store easily and had a really joyous time shopping. I also ran into a couple of my students, and we chatted a bit. The entire experience made me feel so gloriously normal. It took me about 45 minutes to get through the grocery store. I had to sit down on my way back on a ledge because I got a bit tired, which was no problem. I just surfed the internet on my iPhone and waited for the fatigue to pass. I got back to the hospital in about an hour with a pocketbook full of groceries. I was careful to keep my shopping light because I wasn't supposed to be lifting more than 10-15lbs. This was no problem. I ate some of the hospital lunch because there was a good vegetable salad but told them not to bring me dinner or breakfast. Ultimately, I ended up telling them not to bring me any more meals. I was perfectly content to cook myself.

On the 28th, I went shopping again. Mie also came with my form later that afternoon, and I asked her to ask the nurses on my behalf (because she's Japanese and I knew she'd know how to ask correctly) if I could go home early. I was supposed to be released on the 31st, but aside from checking my temperature and blood pressure (always normal) twice a day, and looking at my scar once daily (always normal), they weren't doing anything for me. I saw no reason why I needed to be in the hospital any longer; I felt kind of bad to even be taking up a hospital bed, and it would be easier for me to care for myself at home. The nurse said she'd talk to my doctor. She came back a bit later and said they'd take blood in the morning and as long as it was good, I could leave the next day (29th) at 10am. I was SO thrilled! Dr. Hariyama came in a bit later to check on me. At that point I was sitting cross-legged on my bed playing 500 Rummy with two friends. Dr. Hariyama asked me how I was doing and I said GREAT, and that I really wanted to go home. I thanked her for all of her hard work on my behalf and gave her the angel I'd drawn of her as a thank you card and a hug (which was a bit overwhelming for her).

My blood work was good, and Sachiko sensei gave me a ride back to my apartment. Helen came and helped load the suitcases (I'd needed an extra suitcase for all of my presents), and helped me get them into my apartment. Then we went out for Indian. My hospital adventure had been a really positive experience, but I was very happy to be done with it. I'm incredibly grateful for everyone's help, the nurses (who I gave cookies), doctors and staff at the Kosei Byouin as well as my friends here and back in the States. It was a really good experience, and I'm very happy to have had this surgery here in Japan at the Kosei Byouin with so many kind and qualified professionals!

More to Come: Road to Recovery (ie: maybe a bit too much partying on NYE), a note about payment and insurance and how it worked for me in Japan, and my one week followup appointment!

Saturday, January 7, 2012

My Fibroid Surgery in Japan (Diagnosis, Decisions & Pre-Op)

I've wanted to take some time to discuss my experience with fibroid tumors and having laparotomy (open abdominal surgery) here in Japan. It's been a bit over a week since I came home from the hospital, and I'm finally in a place where I feel I can write this up. I'm going to be as baldly honest as I can. Looking back, I realize I should have been a lot more proactive about this at certain points, and I'm grateful that things worked out as well as they have. Tomorrow, I have my post-op followup appointment with my doctor, where I'm anticipating good biopsy results and to hopefully be cleared to return to work on Tuesday.

A bit of background on Fibroid tumors. These are very commonly found tumors in women. About one in four women have fibriods, and most of the time they remain small and don't require any surgery. Fibroids are 99% + benign. Surgery is required when fiboids (a) grow rapidly (like mine) and/or (b) affect your life by causing heavy bleeding with your period and serious pain. (this didn't happen to me) . Other symptoms of fibroids include frequent urination and eventually a 'pregnant' belly, as the fibroid expands your uterus just like a baby. At the time my fibroids were removed, my uterus was equivalently sized to being four months pregnant.

I was diagnosed with fibroid tumors in August of 2010. This was the result of a general gynecological checkup at a local hospital: the Toyota Kosei Byouin (豊田厚生病院). My doctor, Dr. Yumi Hariyama, as a part of the regular checkup did an ultrasound in the office. There she found one 6cm fibroid as well as a four smaller tumors. At the time, six centimeters was pretty much meaningless to me. I'm crap with metric, and in my mind, I didn't really get this was the diameter of the tumor, which I'm guessing was about the size of a clementine orange. (I do prefer the American way of comparing tumors to fruits as opposed to just giving measurements.)

Even though I really didn't get how big my large tumor was, because my mother has a history of fibroids and uterine cancer, I was understandably concerned and scheduled surgery for the following March. Dr. Hariyama was on the fence at the time as to whether surgery or watchful waiting was a good solution, but she agreed to the surgery. At the time, I scheduled to have laparoscopic surgery to have the tumors removed. I ended up canceling the surgery due to a number of reasons, both rational and irrational. I told my doctor that I was going to attempt having the surgery done at home in the States, but due to insurance reasons and the general business of my life, this wasn't possible. I had a followup appointment with Dr. Hariyama in November, where she said the tumor appeared to have shrunk.

After that appointment, I was supposed to return in six months for another followup, but this followup didn't happen until the following August, 2011. This was entirely my fault. Having too much fun, my tumor was asymptomatic, and my doctor had originally seemed on the fence about the necessity of surgery at all (I'd pushed for it): all of these things made me less concerned about solving the problem as I ought to have been. At my November appointment, my doctor also recommended I stop all oral birth control pills. As I had run out, this wasn't difficult to manage, but I was concerned if this recommendation was medically necessary or due to the tendency in Japanese medicine towards fearing birth control pills. I resolved at this point to see a doctor in the States to find out if it was really necessary for me to stop birth control pills in order to keep the tumor from growing.

As my fibroid was mostly asymptomatic, the only symptom a gradual increase in the frequency of urination (ie: I had to go to the toilet more often, which was annoying) I basically forgot about it until July, 2011, when I noticed that if I laid flat on my back on my futon, I could feel a mass in my abdomen. At first I panicked, but then I wondered if possibly my fibroid tumor had gotten larger. I was due to return home for the summer, so I scheduled an appointment with a doctor at Planned Parenthood, partially to look at the mass and also to discuss what kinds of birth control I could take.

Looking back, I probably should have panicked more and ran straight to the doctor when I felt the tumor, but I hadn't been in the habit of palpating my abdomen, so I figured it was more the tumor had always been like that or maybe grown a little rather than it had almost doubled in size. I think this was a bit of denial on my part as opposed to rational thinking. In retrospect, I should have been more proactive about things, which I will be in the future (though hopefully I won't need to be, lol).

When I saw the Planned Parenthood Nurse Practitioner at home, she palpated my uterus and said that I most likely had a very large fibroid, and that it was similar to as if I was four months pregnant. She had actually given me a pregnancy test without my knowledge before proclaiming I most likely had a fibroid. I mentioned that my Japanese doctor had told me I had fibroids, one being six centimeters. I asked her if she thought I needed surgery and she said not to rush into it, but that my fibroids were rather large so surgery was a possibility. I also asked about birth control. She agreed with Dr. Hariyama that birth control pills were not a good idea because of the estrogen, but that I could do the three month Depot Shot. I did this while in the office. She suggested that I do a followup appointment with my doctor when I returned to Japan. I agreed.

While centimeters did nothing for me, four months pregnant scared the hell out of me, so when I got back to Japan at the end of August, I went in immediately for a followup appointment with Dr. Hariyama. She did another ultrasound and immediately scheduled me for an MRI. After the MRI, she said my tumor had grown significantly. This is where the language barrier went a bit awry, (she speaks excellent English, but there was a mistake somewhere) because I thought she said the tumor had grown from six to seven centimeters, but I found out two months later that she'd really meant that my tumor had grown from six to ten centimeters. Thinking about fruit, ten centimeters was somewhere between 4-5 inches, which seemed like a grapefruit to me. Yikes!

At the time of my MRI, Dr. Hariyama also dropped another bombshell on me: instead of doing the 'easy' laparoscopic procedure, the growth of my tumor and the fact that I now had five more meant that she wanted to do laparotomy. Open surgery! The thought terrified me!

When I was in the ninth grade, my mom had open surgery for fibroid tumors. She had an incredibly difficult recovery. Watching her go through this made me never want to experience the same thing. Now, not only was I possibly going to have to have open surgery, but I was going to have to do it in a foreign country! I asked Dr. Hariyama if laparoscopy was totally off the table, or if she could try it. She said she could try, but it would depend on if the shot (Lupron) that I would receive for four months prior to surgery succeeded in shrinking my tumor. The size, location, and volume of tumors made it very likely though that if she went in to do laparoscopy that she might have to switch halfway to laparotomy anyway.

At this point, I was hell bent on having the Laparoscopic procedure. I was desperately worried about the recovery, and having witnessed my mom go through open abdominal surgery twice, I really didn't want to go through that hell. At the same time, I was worried because my doctor, while willing to try laparoscopy, didn't really seem so convinced it would do the trick. I decided to try the shot and see if it worked. I was optimistic about the Lupron shot's efficacy though because I'd had one shot prior to my November appointment, and the tumor had shrunk from that.

I received monthly Lupron injections for four months before my followup MRI. In the intervening time though, I'd received a second ultrasound (at my request) because the tumor had felt like it was growing when I palpated it. The ultrasound (much less reliable than an MRI) seemed to show the tumor had shrunk. This turned out to be in error, as I found out on the followup MRI. My tumor had not shrunk at all! It had gotten a bit more fluidy, but that was it. Now I was faced with the very real possibility of having open abdominal surgery.

Dr. Hariyama restated that she was willing to give Laparoscopy a try, but there was a 50% chance that during the surgery she would have to change her mind and do Laparotomy. At this point, between my own personal terror and the hormonal issues that the Lupron was giving me (I had no real physical symptoms beyond some very minor joint pain and occasional hot flashes, but my ability to cope with stress or surprises was greatly reduced on the medication, and it also killed my short term memory), I had no idea what to do! I wanted to discuss it with my mom, but my mom's experience with abdominal surgery as well as the fact that she was recovering from a resurgence of breast cancer (which she hadn't told me she was dealing with until halfway through the process) made me very reluctant to tell her anything that would stress her. Because my decision making was totally a mess at this point, every time I sat in Dr. Hariyama's office, I assumed she needed a decision right then, so I just kept waffling, driving both her and me insane.

This brought me to December. A lovely and amazing volunteer (Sachiko-sensei) at one of my schools volunteered to go with me to the hospital the day of the surgery and to offer me any translation help I needed in advance of the surgery. She's Japanese and had lived in the US for over 15 years. She said she knew how difficult it was to have surgery in a foreign country and wanted to do everything she could to help me. I am so incredibly grateful to her for all of her help. She was incredible, and absolutely saved me both emotionally and physically as I went through the pre-op process.

I brought her with me for my final pre-op visit with Dr. Hariyama and also to help me translate with the anesthesiologist. (Dr. Hariyama speaks English but the anesthesiologist did not). At this time, they also took 500ml of blood to bank for me prior to the surgery, so if I had blood loss, I could receive my own blood back. I asked Sachiko-sensei to just touch base with Dr. Hariyama in Japanese to see what she really wanted me to do, because Dr. Hariyama gave me a 50% chance on the laparoscopy and kept insisting that it was my decision about what to do.

After our three way conversation with Dr. Hariyama, I learned some critical pieces of information (that I'd probably been told before, but my tendency to burst into tears at the idea of open surgery I'm sure wasn't helping my retention of information). First: the laparoscopy would require five hours on the table, while the laparotomy would only take two and a half hours. Dr. Hariyama believed that as I would be asleep, the differences in surgical time would mean little to me, but I didn't like the idea of being under anesthesia any longer than I had to, so the idea of a shorter surgery really appealed to me. Second: she also said that if the laparoscopy didn't work, she might have to do a vertical incision as opposed to a bikini cut to do the laparotomy, which would mean a more visible and difficult scar. (and three other small ones). Third: she said that the most likely reason why she'd have to switch would be due to the possibility of extreme blood loss. Fourth: I had until the day before my surgery to make a final decision.

The fact that she stated that I had time to actually do research and make a real decision (why I didn't think of this on my own, I don't know) really settled my mind. Even so, just from our brief conversation, I was beginning to change my mind about laparoscopy. Open surgery was looking like the better choice. I asked Sachiko-sensei what she would do, and she said if it was her she'd do the open surgery. Over the course of the next week, I discussed the problem with friends, and emailed two of my friends in the States who are doctors. My one friend is a General Practitioner, who forwarded my very detailed email to a colleague in OB-Gyn. His colleague responded to me in less than one hour recommending the laparotomy. My other friend, currently an ER physician but who had previously done a partial residency in OB-Gyn, sent a more detailed email basically stating the same thing, further adding that if it was her, she'd do the open surgery.

At this point, I decided that open surgery was the way to go. Three out of three doctors agreed, as well as all of my friends I discussed the surgery with. Once I made the decision, my stress about my surgery dramatically reduced. Because I didn't want my mom, who had had surgery 2 weeks before my scheduled surgery, to panic about my having open surgery, I decided not to let her know until after I was done. This was a very difficult decision for me, but it was the right one. I was also very fortunate because while I was in a foreign country, over the past year and a half, I have made many wonderful friends who went out of their way to help me in so many ways. Fellow ALTs, teachers from my schools, friends my company, friends from Sunshine conversation group, and so many others really rallied to my side. My cup overflowed with offers of help, prayers, and good wishes.

Even as I write this now, my eyes are stinging with unshed tears at about how amazing my friends here have been to me. I also had the incredible support of my best friend Steph, who listened to me cry and stress about what surgery I was going to do, helped my mom out with her post-op recovery, and basically did everything that an amazing best friend could to support me half a world away. Thanks to the internet, Skype, and smart-phones, the world is so much smaller. I was able to call my mom through her surgery and mine, and that also made a world of difference.

In short, my surgery was a wild success. I will write a followup blog going through the nitty gritty of the surgery process and aftercare, and a final blog about payment, but as it is almost 2am, and I have to go in for my Post-Op followup tomorrow morning, I'd best be going to sleep.

If you are facing surgery in Japan, especially fibroid surgery, definitely send me an email or comment. I will be posting more in the upcoming week on my surgery.