Angela’s Brain Stem Injury Blog

thoughts about tiantan puhua

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

1 comment July 16th, 2007

written earlier but never posted this about my last injection

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!

the stem cells were requested from beida’s (beijing university) research center at 9am, but you know with beijing traffic, they’re ALWAYS LATE! so, the OR nurse cameat 9:40-ish am to get me. i requested to be the first of 3 patients getting injections last friday. hehe gotta be pushy to get what you want sometimes…

i was all smiles this time because i knew it’d be the last one of my lumbar puncture injections!!! my last time to OR hubby took more pix when i returnedalso i found out from dr. xi that the reason i had such bad headaches last time i got the stem cell injection was because i turned to my left and right sides during my 6 hours after the injection!!! 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.

Add comment July 6th, 2007

checked out of tiantan puhua on june 30, 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

2 comments July 3rd, 2007