Archive for May, 2007
ok, i’m thinking NO ONE READS THIS! so i’m very unmotivated to keep this updated.
IF YOU’RE READING THIS, PLEASE LEAVE ME SOME COMMENTS SO I KNOW SOMEONE OUT THERE IS READING MY BLOG! PLEASE! OK???? 
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ok, i just finished my
chinese breakfast of zongzi and the gruel. i didn’t eat the hard-boiled egg and the rest. 
zongzi is the rice wrapped in the leaves.
that’s what it looks like when you take off all the leaves.
i’m just in my room waiting for the stem cells to arrive at the hospital. my friend down the hall basil will also get his injection but his injection is going to be injected into his brain, so he is not allowed to eat or drink anything. luckily i have the lumbar spine injection so that’s not a problem. i can eat and drink beforehand.
these are 2 of my junior doctors and that’s tina the head nurse on the far right.
the doctors told me that the stem cells should be here by 10am but last time they were late also. i didn’t go into the OR until 11:15, so we’ll see. william’s still not here yet also, so hopefully he’ll get here before the stem cells arrive.
let me tell you….my TCM (traditional chinese medicine) doctor changed. rose left this hospital a while ago so i’ve been seeing dr. guan. he doesn’t speak much english so wendy comes to my sessions and translates for us. plus i like having her in there with me since he’s a man. this is dr. guan.
he’s nice. it’s just sometimes difficult to talk with him if wendy’s not there with me since his english is basic. but he’s good and i believe more experienced than rose so that’s great! 
ok, since he’s a guy, i was worried and the first time i was treated by him, kamee told me to wear something so i didn’t have to undress in front of him. i borrowed her sweater which has buttons so i wore it
backwards so it was easier for him to get to my back 
which is where he’s treating me.
yea, william’s here now! it’s 10:30! i’m hungry so we’re gonna have some frosted strawberry poptarts now. i’m starving! ok, i do hope the stem cells arrive soon because i want the 6 hours on my back done and finished!!! ok, i’m off to eat my poptarts. stay tuned and i’ll fill you in later on how i am after my 2nd stem cell injection!
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howdy! it is 19:16 now and i just had a cup ramen
which my parents sent over with william when he got back from seoul last friday. i didn’t get to eat since i was on my back for 6 hours!!!! this time wasn’t as bad because the head nurse tina told me that i could move my head from side to side, not just look straight up for 6 hours!!!! 
that was sooo tough last time.
let’s see, this morning, the OR nurse came at 10:45 and 
(on my face=not looking forward to the pain…) took me on the operating gurney instead of a wheelchair 
this time. i begged dr. han to make it hurt less this ti
me so he told me he’d put more anesthetic in me. it was much better this time! i also asked if i could see the stem cells again and he showed me. they are in this tiny little bottle container. amazing that that little amount can help people so much!!!
this time my right leg went numb and hurt whereas last time for my first stem cell injection, my left leg hurt more and my right leg went tingly. this time, it was all my right leg. now you know i just kept praying to god the whole time again and thank goodness he held my hand and kept me calm again. whew!!!!!
i’m so silly. i was looking around the OR this time and i found the digital clock behind the operating table so i know that dr. han finished injecting the stem cells and then waited for a minute or so before he said we were all done!!! that was 11:02!!!! hahah 
that way i knew exactly how long i had to be flat on my back for 6 hours.
i got back to my room
and william was here waiting and working on his laptop. i think he took some pictures and videos. i’ll check my camera later. luckily my digicam is like me and indestructible! it’s come so close to dying many many times but it keeps chugging along! that’s the spirit!!! haha
so this time i finished my frosted 
strawberry poptart 
while i was flat on my back. i had to chew slowly and be careful. luckily i have an IV tube which i use for a straw, so i got to have some water also. i’ve been reading celeb magazines like cosmo, people and us. i brought all the ones i had in our beijing apartment and another patient brought some so in the computer room there are lots! good stuff!!!
it’s funny that i am so darn tired and sleepy so i am going to actually get ready for bed!!! i can’t take a shower because again the area on my back with the bandaid
needs to stay dry for 2 days, dr. xi said last time. so ok….
also i got 5 IVs
(happydot with me on my shoulder) when i came back to my room. remember i told you that my veins are realy thin? so after the 3rd one, my left vein 
wasn’t cooperating and my arm was hurting and it looked like the IV liqiud 
was going into my skin tissue!!! OUCH!!! it was so the nurse esther had to do a quick IV into my right hand top. luckily it didn’t stay. so now i am free of any needles and such! YEA!!!!!!!!! 
let’s summarize my day with my 2nd stem cell injection. i didn’t have any adverse reaction again , no fever, no aches, no pain, and i am soooo happy and praise god for watching over me!!! yea!! so
ok, it’s now 21:20, hubby wants to watch a grey’s anatomy show and then i’m going to bed.
more later!!
May 24th, 2007
so i’m getting my first IV now this morning. i am only getting 3 IVs since yesterday. they were giving me 4 after my first stem cell injection but dr. xi told me they have to give my body a rest before i get my next stem cell injection. 
if you plan on coming here to do this treatment, i do hope you have good veins. sigh. since i have such small veins and taking steroids make them even thinner, the nurses have trouble finding my veins. i have bruises all over my arms from places i’ve had my IVs. tough…
let me tell you what my IVs are suppose to help me with.
- one is to repair my nerves.
- second is to improve my blood circulation and change the microenvironment of the brain.
- the third IV is suppose to improve my blood pressure.
they added another IV for a couple of days to help my blood pressure. you see, i have very low blood pressure and i’ve passed out because of it! that’s why william always makes sure i have water right away when i get up. but it’s impressive that after they’ve added this IV for my blood pressure, my blood pressure has gone up! to like normal!! usually i was about 79-84 over around 50 or 60-something. but now that they gave me that new blood pressure IV, i have like normal blood pressure! around 100 over something. i think that’s so interesting that the IV can help improve my blood pressure!
the fourth one i was getting after my first stem cell injection which was to help the stem cells grow in my body, but they stopped that one so it gives my body a rest before my next injection tomorrow.
this is all interesting stuff, huh?
i am simultaneously excited and worried about my next injection tomorrow. i just talked with zoltan down the hall whose helper is zsuzi, his translator help. he just got his FIRST stem cell injection, also via lumbar spine injection. he didn’t feel any pain! i’m jealous because when dr. han was injecting the stem cells and the anasthesia HURT! sigh. oh well. hopefully it’ll be less painful tomorrow.
we’ll see…
May 22nd, 2007
hello i kept meaning to update this medical blog after my first stem cell treatment last thursday, may 10. it was scheduled at 10am, but it all depends on what time the stem cells arrive. they are brought from beijing university (or beida) research center which is in northern beijing. our apartment in wangjing is also in northeast beijing, close to the airport so from our apartment to the hospital can take about half an hour, depending on the traffic condition. obviously there was traffic because the stem cells didn’t get here until around 11:15. i was the last of the patients to be taken to the operating room (OR). they took me in a wheelchair…which i don’t enjoy.
happydot was waiting for my return on my bed pillow…
william was videoing me instead of taking pictures, so i can’t show you any pictures unfortunately. he is obsessed with videoing everything now!!! for our movie, he says.
so dr. han, the stem cell injection doctor, met me at the entrance and man, talk about nerve-wracking!!! sooooo nervous. they gave me some sterile sandals to put on and then i walked to the OR with dr. han and a nurse.
i laid down flat on the table while dr. han and the nurse got everything ready. dr. han showed me the stem cells which were in a sterile hand glove with ice inside. i was thinking, wow, exciting! so while the nurse and he were getting everything ready, i was lying there, thinking, gosh, this is finally happening. i was soooo nervous and i was thinking, i want to hold someone’s hand while dr. han is injecting me with the Local anesthetic!!! so nervous, my blood pressure must’ve been roof-high.
so he sterilized my back and told me he was going to inject me with the Local anesthetic. nerve-wracking. it didn’t hurt at first but after a while, i was freaking out because my left leg started to hurt! so i told dr. han. then my right leg started tingling and my back was killing me! i told him all this. he said with every patient, it’s different, so with me, he said he started injecting the anesthetic slower so it wouldn’t hurt. but, man, it hurt anyway. he also said that it was good that my left leg hurt because that means he hit the right nerve, or the CFS fluid, i believe he said. you can see the previous blog because i mentioned it there.
he finished injecting the anesthetic and then he touched my back, asking if i could feel anything. i couldn’t. whew!!! happy about that one!
then dr. han started injecting the stem cells. it didn’t seem like a lot when he showed me the container before the injection, but man! it took forever! well, it felt like forever. i mean it all took only about 5 minutes literally but it seemed like hours to me. he had to go slow because i was still having pain in my back and leg.
the nurse was busy doing other things so no one held my hand. i sat there, praying for god to hold my hand and he did, thank goodness! i was praying the whole time this happened. STRESSFUL! but thank goodness, it all went smoothly! afterwards, dr. han even told me that i was a good patient! HAHAHA i’m not sure why but man, i was just glad it was over.
they put me on another moving bed/table and they wheeled me back to my room 
where hubby was waiting, working. it was cool how they lowered my bed.
they put a flat board and i scooted over and slide down onto my bed! then began the tortuous 6 hours! i was on my bed for 6 hours on my back.
you have to lie flat like that for 3 to 6 hours so the new stem cells go to the injury, in my case my brain stem. now, william and i figured we could watch lots of grey’s anatomy or videos on the tv in my room, but since my head was just straight up, i couldn’t comfortably see the tv. so we gave up which was very unfortunate! i started my pedometer timer so i knew exactly how long i was on my back!
it was rough–basically it was like my own personal hell to stay flat on my back for 6 hours! i listened to my iriver mp3 player a bit, read the new magazines 
that my mom mailed me, but everything was uncomfortable. i was also receiving many IVs so i had to leave my 
right arm down flat so the IV could flow faster. i was used to getting only 2 IVs a day since i checked in; they didn’t change anything during their may holiday from may 1-7, so every day, i was getting 2 IVs. after my 1st stem cell injection, i’ve been getting 
4 in the morning
and then 
1 
in the afternoon at 4pm which is to make sure i don’t get any infection.
one of the junior doctors said thymopentin is added as an IV to “reduce immune reaction” and another is an antiobiotic which is used for 5 days after the stem cell injection. they may use longer than 5 days to make sure stem cells grow in my body and not get killed off. so now i no longer get 2 IVs. now 4 in the morning and 1 at 4pm. good thing i’m not squeamish at all on getting stabbed with needles…i just watch and offer places for them to stick me. haha
i mentioned that i was very uncomfortable, right? it gets worse. since rose my TCM therapist cupped my neck the day before my injection (or wednesday), my neck 
was painfully sore too!
i asked for pain medication after i finally was able to get off my back–after 6 hours and 17 minutes! it was 6pm when i could finally get up! i treated myself since that completely sucked and got myself a 
new york steak from sizzler for dinner! (served medium) which came with a baked potato and cheese toast.
it was ok, but not great….that was just my special treat since i made it no prob through my first stem cell injection.
they took off the plastic bandaid which was over my injection area so it wouldn’t get wet when i showered. i wasn’t allowed to shower on thursday so i had to wait until friday to shower. i did a french shower….got a wet washcloth and wiped myself down everywhere with soap. they took the plastic bandaid off yesterday morning when one of the junior doctors came to check on me in the morning, so here’s my back. it’s such a small area that you can’t even see anything!
can you see anything? i can’t. 
ok, so the doctors are waiting to see if the stem cells are working quickly or not in my body. i am very very blessed because i didn’t have any adverse reaction to the injection. william and i were very worried that i would get a fever but you know? NOTHING BAD HAPPENED!! NO FEVER, NOTHING…NOT EVEN MY BACK STAYED IN PAIN. so i am just very blessed!!! i must thank god for watching over me so carefully!!
that is why i wasn’t very fast on getting on here and posting another medical blog–i’ve been fine except for today, my temperature is 37.4; the nurses said if it goes up to 37.5, then i have a slight fever. we’ll see. i’m just tired today. i hopefully will get to see rose today for some more cupping since my neck and back are still a bit tight. we’ll see.
i was lucky and got to cab home with hubby yesterday morning after my 4 IVs finished. he left for seoul yesterday so i went home with him to get some more clothes and have lunch made by our ajumma (our korean/chinese maid/cook). it’s nice i can leave the hospital as long as i sign a leave form.
alrighty, i think i’ve filled you in on my life thus far. more later!!
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i just went to say good bye to alice and ken who’ve been here for 2 months already. they’re returning to los angeles since alice’s treatment is finished. i wanted to show them so you could add them to your prayers–to have safe traveling mercies back home to california.
alice is very popular because lots of people came to say good bye to her and ken. i got a picture of alice with mark, 
one of the physiotherapists. i took a picture with ken’s camera of all the people who came to see them off in the hospital lobby also. hopefully he’ll send me those pictures.
bye bye alice and ken!!!
May 14th, 2007
let me give you a tour of this hospital. i fixed the pictures in earlier blogs so now the pictures aren’t miniscule and you can actually see them! if you go back a few, you can see the rehab room, so i won’t show that again. i also showed you my TCM therapist rose, so you can check her out too.
here’s the entrance to the room i get TCM in.
and there are 3 beds in the TCm room.
and there are posters in there.
here is the computer room which is in the same building, the rehab center building. it’s nice they have 2 desktop computers and a printer.
then there are sofas 
by a tv and dvd player. 
i asked wendy how to get the dvd player to work, but she still hasn’t told me.
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ok, now remember how i told you there was a week-long holiday from may 1st to the 7th? so nothing new happened here at the hospital. i just continued to get my 2 bags of IV fluid. every day, i get my IV started around 8. the nurses come by between 6-7am to check my blood pressure and they inject a solution into my IV pump which is to make sure the blood doesn’t clot. they used to check my temperature around noon but they haven’t for 3 days. i guess they don’t worry about me so much??? not sure.
in any case, i was very keen to get the may holiday over so i could finally start getting the stem cell treatment!! well, the good news was that we finally had the big pow-wow meeting with my head doctor dr.wang who’s a neurologist and dr. han who is the stem cell injection doctor. i’m not sure what his official doctor title is…so i just say he’s the stem cell injection doctor. haha
we had our meeting with them today at 2pm. wendy also attended just in case we needed someone to translate. well, dr. han’s english is great! he spoke english to us and even translated what dr. wang was saying. she showed us the MRI results that i had taken before the may holiday started. she showed us the location of my injury. she said it was so small that if no one had told them to look for it, they would’ve missed it!
so luckily william and i came up with a list of questions to ask them about the procedure and it took an hour for it to end. dr. han was really pleasant and patient and told us that i will be given a lumber puncture (spinal tap) tomorrow at 10am to insert the stem cells, because an injury site insertion is too dangerous due to the location (even a needle might cause damage). we reviewed each question and they answered them all. they are so great!!
he and dr. wang explained how my MRI “looks normal” unless someone knows exactly where to look and only then can you see the very slight injury. the location is very dangerous and i am lucky that nothing worse happened, e.g. stop breathing, heart, vision, etc.
dr. han and dr. wang both believe i am an excellent candidate for a good recovery as my brain has shown excellent plasticity (flexibility to repair) so far with my natural recovery. it is very exciting but we are realistic and will be thankful for a safe procedure and any progress at all ….. though i hope and pray for 100%. it was cool to learn that the change in my voice is probably not from the tracheotomy but from the nerve injury so there is hope for a full recovery there too. i would like to do voice over work again, God willing.
i will have to lay still for about 3-6 hours afterwards, which will be tough but i will do my best. i have to lie down flat so that the stemcells don’t drain out of my brain down into my lower spine (as they are injected into the cerebrospinal fluid (CSF), Liquor cerebrospinalis, the clear bodily fluid that envelops the brain and flows through the spinal chord. cool; i knew that.
theoretically i could have an SLE flare based on an immuno reaction (rejection) of the stem cells but they have taken precautions (with medications and by only giving me neural stem cells – which trigger a lesser reaction apparently). it will take 3-6 months for the stem cells to grow into proper working cells but i should see some near term improvement and there is good potential for them to re-mylenate (recoat the nerves so there is no moisture in them) and otherwise heal the injury spot and i may be good as new. that is the optimists view. and i am an optimist. that’s just peppy perky me. hmmmm. sounds like someone is in need of alliteration, e.g. i love my bird, peppy perky pippen.
i miss my birdies!
well, off to bed and here is to me! 3 cheers! hurrrah! your favorite guinea pig (oink).
wan an (= good night in chinese)!!!!
May 9th, 2007
entrance to the rehab building.
the front desk in the rehab center.
May 1st, 2007
