i had my last appointment with my rheumatologist here in london august 13th. i told him that i keep having fevers and even emailed him the information, just in case it was my SLE causing a flare with all my fevers. well, my dr didn’t think it was caused by my SLE but then again…he’s been mistaken twice before in the past, so i am always cautious about listening to what he says. luckily he’s in a group with a brilliant head rheumatologist so that’s why i enjoy being seen by that doctor; if there is ever a problem, i can always see the head guy who is just a lovely man!
now i also mentioned that i’ve been going to the hospital for tropical diseases here since i’ve been back. my GP suggested i go there and i’ve been seen by 3 different doctors there. they’ve taken so much blood from me and have done so many tests on my blood. well, last week on thursday i had another appointment with a doctor doherty. he listened to hubby explain my illness’ history and then he went through the blood results.
they tested me for everything such as malaria, denghi fever, meningitis, etc. well, luckily i didn’t have any of those but one test came back positive–the one for strongyloides stercoralis. it’s basically a worm in my small intestine. it causes leakiness in the intestines and it’s fortunate they found it early because it can actually death, in the extremist cases! the doctor told me that he wanted to check my blood for one more worm, the filarial one, so after he prescribed me some medicine, i had to go get more blood taken. i haven’t heard back from the hospital yet but we’ll see….
i went to the pharmacy to pick up my medicine
which is prescribed according to one’s weight. i got 4 tablets and i took it that evening. i got a brochure on the medicine and it takes 4 weeks for the medicine to have a definite effect. unfortunately i still continue to get fevers, like yesterday it was 38.0. at least today, my fever was only 37.3 in the morn.
hopefully that medicine helps cure me of these horrible fevers.. it’s unfortunate that the medicine takes so long for a definite effect. sigh.
ok, so that’s my update.
********p.s. this is also posted on my yahoo 360 blog:
http://uk.360.yahoo.com/mbinim
September 11th, 2007
i have to tell you that it has been 2 months since i checked out of tiantan puhua hospital in beijing and you know what? i am still getting fevers!!!
i have written my junior doctor, doctor xi, at tiantan puhua about my fevers and i requested that she ask the directors also about why i am getting these fevers. she told me that the directors at first were saying that maybe it was due to the medicine i have to take to keep my SLE under control. i also asked her if they’ve had other patients who have had consistent fevers after they checked out, and dr. xi told me that no, there’s been no one else who’s had consistent fevers like i have.
luckily in england, the british people travel quite a lot, and they have hospitals for tropical diseases which is where my GP sent me after i saw her a couple of times. she had no clue why i keep getting the fevers, so she sent me to the hospital for tropical diseases which is over by my main hospital, UCL (university college of london, i believe it stands for).
i’ve been to the hospital for tropical diseases 3 times so far. 
i went in today to give more blood. i went in last friday also and saw a different doctor who suggested i get blood cultures done. i have to go in 3 different days to get my blood pulled from 3 different places for the results to be 90% accurate. i have one more day to go in, tomorrow, and then i have another appointment on thursday. we’ll see what they say. so that’s my news thus far….
i still continue to do my tongue exercises so my tongue continues to improve. i still do my exercises left and right and up and down with my tongue twice a day, sometimes more. i still have to work more on my balance. since i don’t make it to the paracourse often where they have the balance beams, i haven’t been working on my balance as much. it’s unfortunate that the hospital didn’t give me any exercises to help work my balance. they were disorganized when i checked out. sigh.
******** p.s. this is also posted on my yahoo 360 blog: http://uk.360.yahoo.com/mbinim
September 4th, 2007
i have to tell you that i meant to go back to the hospital for some physiotherapy after my discharge from tiantan puhua hospital on june 30th, but i never did. why?
i got sick 3 times in july 
so i never got a chance to go back to the hospital for any therapy sessions. i luckily can work my tongue by myself as dr. wang and dr. wu, the “directors” of my case told me to. i had planned on returning to the hospital to work with alice, my physiotherapist, after i checked out, but again, i had fevers so i could barely get out of bed.
we were lucky to leave china when we did because i had a bad fever just 2 or 3 days before we left. luckily i also have a wonderful GP in beijing at the international medical centre beijing, a dr. salahat, who prescribed me some antibiotics and some vitamin C drops and some bufferin cold medicine which dr. xi, my main “junior” doctor at tiantan puhua, prescribed to me when i called her and told her i had fevers. sigh. we were lucky i was ok when we left beijing. i did not have any fevers, so that was a true blessing!
i will have to add more pictures about what happened at tiantan puhua later. but i wanted to let you know that we are back home in london now. luckily i am not sick now. i had another fever 2 weeks ago so we didn’t make it to our church here in london. we were disappointed to miss it, but oh well.
also i need to work on my balance problems which alice worked on with me during our therapy sessions. luckily there’s a balance beam at primrose hill which i try to go to a couple of times a week. it’s still difficult for me to walk heel-toe-heel-toe which is called tandem walking by my doctors here in london, but i work on it there on the balance beam. hubby watches me occasionally and he says i have DEFINITELY improved. i think it’s easier for me since i no longer just fall off so quickly. i can stay on longer and can actually walk sideways, meaning my feet are 90 degrees to the beam, all the way across. it’s still difficult for me to walk normally on the balance beam. it’s good practice for me. 
i just have to keep up my therapies by myself!
more later! 
********p.s. this is also posted on my yahoo 360 blog:
http://uk.360.yahoo.com/mbinim
August 7th, 2007
alright, now that i have a good internet connection outside the hospital, i can give you all my thoughts on my stay at the hospital.
first of all, it was difficult communicating with the nurses because many of them do not speak english. it was difficult talking with them at first. some of the nurses in the south ward speak a bit of english (like ally who’s no longer working there and jingjing who replaced her) but MOST of them do not. unfortunately my chinese isn’t good enough to really talk with them, so oftentimes, no communication went on…but i do miss seeing the nurses. 
many of them were very attentive and i can tell you that there were a few gifted in searching out my small, non-existent veins for my IVs. irene and shirley were very good! i miss them dropping off my 9am, 12, 4, and 8pm medicines, telling me, “9-clock…12-clock, 4-clock, 8-clock.” i miss them. hahah
second, i was lucky considering that many other patients had all sorts of problems. for example, some people had diarrhea and others had bacteria infection in their brains due to their brain surgeries. it’s funny that as soon as i check out of tiantan puhua, i get sick. i had a fever of 37.8 C and it lasted for 3 days. i got home on saturday and i started feeling sick the next wednesday. luckily by friday, my fever had lowered and by saturday, i was fine! whew! third, let me tell you, don’t have high expectations for therapy at this hospital. for me, the most important therapies were speech and physiotherapy. i did NOT have a real speech therapist until basically a month after i checked in! i had lily for a little while who was such a great speech therapist! but turns out that her boss zhou comes into my room during our therapy session, starts yelling at her in chinese for a while, and then leaves. poor lily was crying and i asked her what was wrong. it basically was about how she spent too much time on this one patient during february and march because they did not have a lot of patients then. i’ve heard different stories since, but nonetheless, zhou is a poor manager which is why she is no longer the therapy manager. mark became the manager a few days before i checked out of the hospital.
granted, they understand they do need to work hard at improving the therapies, but i was disappointed because the most important part of getting stem cells is also working them so they know what their new role’s/job’s supposed to be! dr. wang and dr. wu, the” directors” of my case constantly stated this: stem cells plus therapy produces the best results!! well, obviously i got 4 stem cell injections as i’ve said on this blog, but therapy? quite lacking. so you know what? i was in the hospital for a total of 66 days and i had 19 days of speech therapy sessions. yes, that’s right. ONLY 19. that’s all. so yes, the hospital knows their therapy is lacking and they told hubby and me that they are working hard to improve them.
also i wrote many patients who had been treated at tiantan puhua and nanshan stem cells therapy hospitals to get an overall view of the treatments/therapies. i found that at nanshan, they have the vocastim collar which actually would’ve been EXCELLENT in my healing process, especially because it helps people with ataxia, dysphasia, and dysarthia problems. i have all 3 of those!!! it’s basically Electric Current Therapy of larynx paresis, aphasia, dysphasia, dysarthria and dysphagia.
i put a picture of christine with the vocastim collar on in a previous blog so you can check it if you want to see it.
you can read about vocastim here:
http://www.physiomed.de/index.php?id=94
you can see more here:
vocastim.pdf
not sure you could read that so i copied it here:
i actually wrote the company for information and this is a pdf file from them.
.******************************************
Electric Current Therapy of larynx paresis, aphasia, dysphasia, dysarthria and dysphagia
(as published by Johannes Pahn, Martin Ptok, Hans-Joachim Rad
July 16th, 2007
hi there, i kept trying to do my blog while in my room at the hospital but i was having trouble with the LOW/WEAK internet connection despite the new modems bought in both the north and south(my) wards. sigh. so i just gave up doing my detailed blogs. now that i’m out of the hospital and in my beijing apartment, i can do my blogs and fill you in on everything.
first of all, i had my last stem cell injection on june 22nd. i was very upset because at 8:30, 30 minutes before my 4th stem cell injection was scheduled to take place, i was informed that it would NOT be dr. han who was doing my injection. NOOOO!!! it would be dr. xu and dr. xi, my junior doctors; again, the term “junior” is my own choice and termology. the reason i say that is because they are not the head doctors of my case, the “directors” as they are called–dr. wang and dr. wu. so i was very very VERY upset to hear about this change before my LAST injection!!! i was used to dr. han doing it and plus he knows how much anasthetic to use, etc.
so william (hubby) was with me that morning and we were both shocked and taken aback to hear this change so close to my 9am scheduled injection!!!! we were told by xi that morning when the junior doctors came by to see me; again, all the junior doctors come by every morning to check on all the patients. what i didn’t get was why xi waited until the DAY OF MY LAST STEM CELL INJECTION to tell me that she and xu were scheduled to do the injection!!! talk about complete utter shock on mine and hubby’s part!!!
i asked xi when she knew about this change and she said a week earlier!!! talk about more shock! so i was worried and was not feeling like doing it under xu, one of the male “junior” doctors. well, so it turns out that dr. sherwood, the vice president of tiantan puhua hospital, came to talk with us and reassure us that dr. xu has been doing the injections for months and that everything would be fine. dr. han had other surgeries that day so he was not available to do my injection. SIGH! :-{
hubby and i discussed and i didn’t want to put off my injection any longer because that would mean more time at the hospital. also we were told that at other stem cell hospitals (i think nanshan), even nurses are allowed to do the stem cell injections! i think that is way too much responsibility for nurses to be doing that. that’s why if that was the situation at tiantan puhua hospital, i don’t think i would want to get the injections done then.
i ended up 
going to OR 
with this OR nurse 
and xu was actually quite good. he doesn’t speak english well but it was ok because xi was also in the OR and thank goodness she was kind enough to hold my hands. i did some SERIOUS SQUEEZING of her hands. hehe 
actually i was kind of crying before xu started because i was freaked out that it would be xu doing the injection so i had to really try to calm myself down. DEEP BREATHS….LOTS OF PRAYING….sigh. talk about stressful!
i was sooo thankful that i had no problems getting my 4th stem cell injection. i actually looked at the clock in the OR and i got in there around 9:46, xu did the injection at 9:50 and i was out at 10. i think i said on the video. you can see the video here:
http://www.youtube.com/watch?v=XCgAYOVuch8
i was taken back to my room
and i found out that the reason my head was hurting so much after my 3rd injection was because i turned on my sides. i had been told by someone before that it was ok to turn on my sides. BUT NOOOO!!!! don’t do that! that was the reason i had such terrible terrible headaches and pains after my 3rd injection! the 6 hours spent FLAT ON MY BACK after my 4th injection were hard but not difficult when i thought about all the head pain i had after my 3rd injection because i had turned on my sides during the 6 hours after the injection.
so well worth it NOT to have head pain by lying flat on your back!!!
ok, that’s an update. i will update later with pictures because that makes it much more fun, doesn’t it?
wan an(=good night)! it’s nice to be back in our beijing apartment instead of the hospital but you know what? i miss the nurses in the south ward! so HELLO TO ALL YOU NURSES IN THE SOUTH WARD! 
**p.s. i also copied everything onto a different site because everyone kept telling me how hard it is to open this site. try this URL and let me know if it is quicker to load than this one, ok?
http://uk.360.yahoo.com/mbinim
July 3rd, 2007
i’m pleased about that because although this is the easiest hospital i’ve been in during the past 4 years, it’s still a hospital and i’m looking forward to going home(our apartment in beijing in wangjing).
ok, time for bed! wan an (=good night)!
June 20th, 2007
i really enjoy working with lily, my speech therapist (SLT), because she’s very enthusiastic and great. plus she just came back from her additional speech therapy education, so she’s on the ball!! she uses her cell phone to look up english words when she gets stuck and can’t think of the english word. i also like that she teaches me chinese words in our sessions because she learned speech therapy in chinese and i don’t mind! i actually like having a chinese lesson in our sessions. she brought a japanese pop song this morning for part of our session. it’s good for me to start singing because it helps with my breath control also. so i’m very happy to be learning a song. i’m not very good at it though.
chinese learn songs through do re mi fa so la ti do, so they can just write 33 666 43231 and they can make sounds from the numbers. i had to write it down so i would remember what 4 is (it’s fa); 1 is do, 2 is re, 3 is mi, 4 is fa, 5 is so, etc. you get what i mean, right? so the japanese pop song is called oriental cherry in english. lily has a great voice also, so it’s fun to sing with her. :-)let me show you songs that lily, my SLT, is teaching me. the singing is good for my voice and moving my tongue and such in my mouth because my tongue is still crooked. it helps me work on getting my voice exercised so that it does get higher, like it used to be before i got injured and sick in 2003.
let me show you songs that lily, my SLT, is teaching me. the singing is good for my voice and moving my tongue and such in my mouth because my tongue is still crooked. it helps me work on getting my voice exercised so that it does get higher, like it used to be before i got injured and sick in 2003.
http://www.youtube.com/watch?v=sYzmymvl-os
and
http://www.youtube.com/watch?v=VHygJmkFfzE
http://www.youtube.com/watch?v=eVhxyPHElRE
i am very very disappointed that tiantan puhua hospital does NOT have the vocastim collar which is extremely beneficial for speech therapy. i talked with patients from nanshan hospital which is south of here, near hong kong, i believe? and they have the vocastim collar there! i was actually looking forward to using it since patients from the nanshan hospital told me how they used it every day for half an hour and it helped a lot! some patients even bought their OWN vocastim collars so they can use it on their own! the collar basically is electrical stimulation to help muscles work properly, and christine gray who’s the one who told me about it said vocastim helps muscle function and “I can only imagine that helped my larynx & throat muscles work better.” this is christine with the vocastim on.
i wish this hospital had one. i asked lily about it and she said she requested this hospital buy one last year but nothing was done. hopefully since i brought it up to kotan today, i do hope they will get one so i can use it before i leave here!!! let’s hope that!!! i know there are lots of patients who would benefit from using this vocastim collar!!! ME INCLUDED, OF COURSE!!!
********************************************************
the nurses here in the south ward come to visit every patient in the mornings around 8-8:30 and i got a picture of them one morning. you can see here.
that’s sarah on the left, irene, sunny in the front and ally on the right. i’m glad they got their english name tags about a week ago so it makes it easy to see who it is. before, they just had numbers on their name tags so i couldn’t remember their names! i kept asking their names at first and then i gave up! luckily they all have their english names written on their name tags! here’s another picture of the nurses here in the south ward.
on friday mornings, all the senior doctors and junior doctors come to visit their patients. this is the time patients can ask the senior doctors questions. well, the junior doctors come visit us every morning also and if you have any questions for the senior doctors, they can be asked then. xi is my main junior doctor. also the terms of senior and junior doctors….i made those up to explain their status. haha :-p i think the senior doctors are also called the directors of your case. it’s easier for me to just say senior and junior doctors, you know? here’s a picture i took last friday when they all came to visit me.
that’s wendy (the patients’ on-hand international department member who goes around to see the patients every day also) on the far left, then dr. wu, dr. wang, amy, xi, jackey in the brown dress and lily, my speech therapist, on the far right. i have to show wendy again because she had a pretty shirt on today….
remember i told you that i’m the worst patient for the nurses to get veins for my IVs and blood? well, i am silly and videoed sarah taking my blood. the day after my stem cell injection last wednesday, they take a blood sample the next day, so this was thursday morning. the nurses usually come around 6-6:30 in the morning to check your blood pressure and inject something into your IV needle so that your blood doesn’t clot and cause trouble for the IVs later. the nurse early in the morning didn’t get enough blood for the sample, so sarah had to come during my speech therapy session and get more blood. if you are squeamish about blood and blood-taking, you SHOULD NOT watch this… http://www.youtube.com/watch?v=h5LksIEcD1g that shows sarah getting my blood.
this is my back after i took the bandaid
off on friday night when i was allowed to shower. 
my leg with the
IV needle
and my IVs.
they had to stick my IV needle in my wrist yesterday but that went bad already after a day! sigh. 
this is sarah getting me again. 
hubby must’ve taken lots of pictures when sarah was on duty…i got another picture of irene.
she and shirley are the great ones for finding veins for hard patients like me.
last thursday, isabelle made coffee time
for the patients and their families in the computer room which is in the rehab center
. here are a couple of pictures for you…
and
also last tuesday, they started offering yoga in the PT room
(don’t you love that spelling??? YOGO!!) but unfortunately i couldn’t go last tuesday because i had just had dinner of a big mac meal set 
with koo and susan and basil and thursday was the first coffee time, so today was the first time i was able to join the class. i used to do yoga in tokyo and london, so i know my yoga. this was good because it really challenged my balance which is one of my problems–ataxia. it was interesting and i made a suggestion that the instructor (carrie, i think her name is) also speak english. lily was in the class tonight and she was doing brief english translations for me and agnes, a hungarian patient here. carrie said that on thursday she will speak both chinese and english. i do hope so!!
ok that’s enough for this blog. wan an! ;-)(=good night)
June 12th, 2007
hiya, i’m very pleased that hubby william returned yesterday safely from seoul with lots of goodies for me from my mom -and dad, so that’s great! :-):-D
but i’ve had headache pain EVERY DAY since wednesday, the day of my injection. soo painful! william took my picture this morning while i was getting my IVs 
and i was trying to smile.
they’ve been giving me ibuprofen for pain relief and since yesterday night, they started giving me fenbid which is extended relief ibuprofen, william said. so i basically slept a couple of hours this afternoon to make up for poor sleep i’ve had since wednesday. that was good. i do hope the pain stops coming back.
the doctors said that i lost CSF(=cerebral spinal fluid) when they did the lumbar puncture for my stem cell injection which causes brain pressure to change. i also had really low blood pressure today after they started my IVs, so they will take my blood tomorrow morning to check. sigh. so yes, although the lumbar puncture for my stem cell injection on wednesday was absolutely excellent, the days following have been quite poor….meaning terrible head pain and low blood pressure.
June 10th, 2007
it’s been 2 days since i had my 3rd stem cell injection and man, this is the worst pain i’ve had since i’ve been here! my head has been in pain all day so i haven’t been functioning well today. i could not have my speech therapy with lily this morning because i was just in pain. then i was in bed for most of the morning, trying to read. then i went to my TCM(=TRADITIONAL CHINESE MEDICINE) session with dr. guan. it was nice since he gave me a massage on my head and shoulders. i skipped PT(=physical therapy) with alice since my head still hurt and i’ve been in my room.
i’ve called the doctor since i’m still in pain. i’ve had to take lots of ibuprofen today because the headache has not disappeared. i feel soooo crappy!
so although the day of my injection was great, this is the worst pain i’ve experienced my whole time i’ve been here!
please pray for me, that this pain leaves me soon!
June 8th, 2007
Previous Posts
chinese breakfast…hubby wanted it. i’ve been having cereal and pop-tarts for breakfast lately because man, you get tired of having chinese food here! 
xi told me that you must stay FLAT ON YOUR BACK the whole 6 hours to make sure you don’t get any headaches! so this last time, i stayed flat on my back reading magazines. i wish i could sleep like basil does; he also got his injection on friday.
