T***a
发帖数: 457 | 1 http://www.alifeatime.org/cn/children/story.aspx?id=481
如果手术的确是最好最有效的治疗方法, 我觉得还是值得努力的! 目前她在用输血和吃
排铁药物的方法维持. 真是受罪啊! 她妈妈为了给她找配型的骨髓, 又生了一个弟弟,
可惜没有配上. 幸好终于在台湾找到了配型, 可是手术费又实在太昂贵. 不晓得美国对
这样的病孩是如何治疗的
【 以下文字转载自 Medicine 讨论区 】
发信人: Tanna (天涯), 信区: Medicine
标 题: Re: 求教：重型地中海贫血患儿若作骨髓移植效果如何？
发信站: BBS 未名空间站 (Sun Dec 11 02:22:36 2011, 美东)
今天在网上查到这个地方:
http://www.fondazioneime.it/index_en.php
有人知道这个在意大利的机构么? 这个 PROFESSOR GUIDO LUCARELLI 是不是很牛的人?
似乎在Nature发过不少论文啊?
不晓得能否申请到这里的免费手术机会...
如果我发的板块不对的话, 谁帮忙转到其他相应的板块? 请高人指点一下. 谢谢! | T***a
发帖数: 457 | 2 在网上偶尔看到这个求助的小女孩，感觉很有缘份。因为我自己也是地中海贫血的携带
者，包括我儿子也是。幸运的是我们属于minor, 不需要治疗。很想帮一下这个可爱又
漂亮的小女孩，早日摆脱不幸的命运。不晓得若她接受骨髓移植（已在台湾找到配对）
，预后如何？
因为手术费用相当昂贵，目前似乎没有人愿意捐款。所以想先听听专家的意见，如果是
好的治疗方法，第二步再帮她想办法筹措手术款。不然浪费了捐助者的热心，也苦了孩
子。
http://bbs.yaolan.com/thread_51773840.aspx
有关孩子的详细情况，请看以上帖子。
美国会不会有机构愿意接受这样的小孩，进行免费或者减免费用的手术治疗呢？ | T***a
发帖数: 457 | 3 发一下孩子的照片和医学报告吧, 各位现在或者将来的医生们,请帮忙看一下, 怎么能
帮助到她. 谢谢! | w***0
发帖数: 222 | | T***a
发帖数: 457 | 5 什么意思啊?
我这个问题发了好几个版了, 至今没有回复. 难道没有人知道有关这个病的治疗么?
【在 w***0 的大作中提到】
: 。
| S**********e
发帖数: 1325 | 6 看到这张孩子的照片，实在忍不住了。说一点我知道的，但其实也没什么用。
我在芝加哥的cook county hospital面试时，听他们自我介绍说他们那里可以看到来自
世界各地形形色色的病人和病种，只因为他们是很大的公立医院。我自己孤陋寡闻，但
是他们说，很多外国病人是千辛万苦搞到签证，芝加哥O'Hare飞机场一落地，直接拉着
箱子到这个医院看病。无论病人有没有支付能力，他们都会给与治疗（我的理解是，那
里的大多数病人其实都是支付不起的）。医学是独立于经济能力之外的，如果病例很有
意思，那么还会得到额外重视（比如大查房）。不知道配型怎么解决。祝好运。 | I****a
发帖数: 407 | 7 Sleepcoffee, I hope you are matched in cook county hospital which I believe
it is a great teaching hospital from my personal experience. Dr.Brendan
Reiley was the department chair when I was round and his morning report was
second to none, I was almost 顶礼膜拜 each time. It was such as loss as he
moved to Weill Cornell. It is true patients come straight from airport to
get treated. Below is what he wrote on JAMA (JAMA. 2004 Sep 8;292(10):1153-4
. A piece of my mind. In memoriam.)
The cops bring her here after she collapses in Customs at O'Hare. They don't
know much about her. She has only the one small bag, not even a change of
clothes, just a 30-day visa from Nigeria, a one-way ticket from Lagos, and a
dog-eared copy of the Koran. No, she hasn't said anything, the cops say.
They seem bored, leave quickly.
In the ED, her temp is 105 but she is cold, her lips and fingers purple.
Dopamine is running when the blood smear returns: no trophozoites or
gametocytes but severe pancytopenia. And bacilli. Gram-positive bacilli. On
the blood smear.
When the pressors kick in, she opens her eyes, looks around. An African
American nurse who looks like her is stabbing at the back of her hand. A
Chinese man hangs bags of honey-colored liquid on a pole above her head. A
Muslim woman shines a light in her eyes, says something about bone marrow. A
bearded man in Sikh headdress and rumpled green pajamas nods yes.
Where am I? she asks.
The nurse answers: At the County, girl. Where you think?
She closes her eyes. Then she says, What country is that?
The good ole youessovay, girl. Where you been?
She closes her eyes again.
The intern's questions begin.
She doesn't answer.
We find the two envelopes in the pocket of her robe. One contains photos: a
park somewhere, a tall, smiling African man wearing a Chicago Bulls cap, an
infant in his arms, two toddlers at his knees. The other contains typed
medical records from a clinic in Nigeria, terse descriptions of "postpartum
anemia" and nondiagnostic bone marrow, and a letter she has written to whom
it may concern with a detailed medical history: months of fatigue, worsening
anemia, consultants' opinions, her own clinical suspicions. She is a
physician.
We do what we can but now she is in and out of consciousness, rambling one
minute, unresponsive the next. Once, she opens her eyes wide and says to no
one: America . . . walk very fast . . . God is great. . . .
We dial up the dopamine.
By dawn she is on Levophed and a ventilator. The bone marrow is all blasts,
Auer rods. Rounds in the ICU take a long time and when the team finally
comes to her, the Heme and ID people are huddled around her bed talking
about options and a nurse next to me at the periphery of the crowd whispers
something about a plane crash in New York but no one pays much attention,
plenty of crashing going on right here. All agree she's between a rock and a
hard place—fulminant sepsis, no clear source, no functioning white cells—
and then the surgeons strut in, say they can't find anything in her belly
and CT, we'll just have to wait and see what happens, and then someone sets
up a portable television at the central nursing station and we gather around
to watch the replay of the second hit on Manhattan, the one that changed
everything.
By midday, her pressors and PEEP are dialed way up and the unit clerk keeps
dialing the TV, watching that second plane over and over again—its sudden
swoop out of nowhere then lost briefly behind the tower (the sky so sunny
and clear, cerulean blue) and then there it is again its nose dipping
slightly down and left, taking aim (hard to believe but there it is, the
plane taking aim) and then it's gone, as if the World Trade Center had
opened giant jaws, swallowed the plane whole and then fumed, furious,
snorting black billows of fire out into that azure sky—and the Muslim
intern and the Sikh fellow are dialing home to see if their loved ones are
safe, they know before the rest of us what this will mean even as Rather and
Brokaw and Jennings speculate on the TV about Hamas and Mogadishu and Osama
, and who might be next, L.A. or Chicago, maybe.
Around noon, the suits arrive. They say they need to see who can go, how
many beds can we empty, the mayor called, we have to be prepared, you know.
They have just done this down in ED and Trauma and Triage and everyone there
looked at them like they were crazy, huge crowds of patients showing up
here unannounced every day, on normal days, what exactly do you have in mind
? We think the same but we walk them through the unit, all 16 beds filled
with patients on ventilators and drips, Rather blathering on the TV about a
new kind of world as we review our own: 5 patients with names like Jefferson
and Roosevelt and Lincoln; 2 Mexicans; a Dominican; 2 Pakistanis; a Pole
and a Russian and a Cambodian; 2 Arabs and the Nigerian doctor with the
Arabic name. When we come to these last three, the Muslim intern keeps her
eyes down, seems to hold her breath. But nothing is said. The suits leave.
Through the day, I try repeatedly to reach my brother, whose office is one
block from Ground Zero. Finally, I get through on his cell phone. He is
walking, north up the FDR Drive, fleeing Manhattan on foot with thousands of
others. One minute he was looking out his office window at the fire 80
stories up and the next thing he knew everything was black, pitch black, all
visibility vanished. He says, I hid under my desk like they taught us in
grade school, remember? That's what I thought it was, Bren, I thought it was
the bomb, whoever thought the whole building could come down? After a while
when he wasn't dead he got up from under his desk, went outside, and
started walking, toward the light. I can't dial out, he tells me. Call Mom.
In the evening in the unit, the doctor is dying. The crowds are gone,
nothing more to do. The nurses have laid out her family photos on the sheets
around her. One doctor stands by her bed. He is not one of the many called
in to see her. No, he says, I just heard about her, through the grapevine,
you know? He looks like her, has a name like hers, and so I understand. We
talk about her clinically. Clostridium something, the lab thinks now,
probably her gut but nothing surgical.
Too little too late, we both agree, not a new experience for either of us
here.
But, unlike me, he has also been there, the place in her photos. He grew up
there. Do you see this park where her kids and husband are standing? A
lovely place, he says, shaking his head, a lovely place. To come here, like
this, now, she must be very brave, he says, fingering the photo of her
infant child.
An awkward silence follows, broken only by the hiss of her ventilator. I
notice he is holding her Koran. I mention this. He says, Yes, I will read
something, it is the way of my people. Then his eyes tear up and he turns
away. This surprises me. Such feeling for a woman he doesn't know? I ask if
he is all right.
He hesitates, then tells me about the phone calls his wife received at home
this afternoon. And what happened to their kids at school today. Vile, ugly
stuff. He skips the details—his voice is British-clipped, urbane, genteel—
but that only makes it sound worse. He says, Of course my wife and I know
this sort of thing, but our kids. . . . He shakes his head, his voice trails
off.
I wonder silently why he is here, not home with his family. He senses this,
then perks up and smiles, his eyes glistening. He names a physician, a
colleague here at the hospital, a native Chicagoan whose brothers are cops
and firefighters. He says they and their families are with his own wife and
kids right now, at his home, just in case. A potluck? he asks tentatively.
Yes, that's it, they're having a potluck. I will go to them shortly, he says
. Nodding at the dying doctor, he says to me: My wife, she understands.
He opens the doctor's holy book. I ask if I should leave. He says, No,
please, and then softly, so that only we can hear, he begins to read aloud.
I don't understand the Arabic words but their sounds in his voice in this
place take me back to a time I had forgotten, when as boys we came from all
around down to the baseball diamonds under the shadow of the Brooklyn Bridge
where, as the sun rose and the fungoes flew and the chatter began hey batta
batta, the Wolfman would begin to sing. That's what the kids called him,
the Wolfman, we had no idea, a mullah, an imam singing from some rooftop
minaret across the river, somewhere in Flatbush maybe, we never knew, but it
seemed to come from very far away, and for a few moments all the kids would
stop to listen, like it was the national anthem or something, the trembling
tenor voice so proud and sure, echoing down the Battery and around Jamaica
Bay, rousing the great immigrant city into a new day, the same psalm sung
that day by others in Casablanca and Damascus and Jerusalem, as their
fathers had done and their fathers before them every day for more than a
thousand years.
Back then, on the ball fields under the bridge, we listened only long enough
to clean our cleats, dust the plate. We never knew the words or why the
Wolfman sang. But here tonight in the County ICU, the doctor's holy book
sings about a river of honey in a valley forever green. I know this because
he reads it again, in English, for me.
In the morning, September 12, she is gone. Someone else is in her bed now, a
gangbanger with HIV. His story is old news. On the TV at the nurses'
station, cameras pan the entrance to a hospital in lower Manhattan. It is
the hospital where I was born, where my son was born. There, outside the
eerily empty ED, a coiffed reporter tries to interview the doctors and
nurses. They're standing around, drinking coffee, waiting. They don't say
much. They want to do something. | I****a
发帖数: 407 | 8 关于这个患病的小女孩,最重要的是要明白这一点: which poison you take?
1. 移植可以根治不管是亲属还是非亲属,但是早期死亡率可以达到10-15%尤其是非亲属
移植.长期存活率虽然可以达到70%以上但有一小部分病人会遭遇移植物抗宿主反应,主
要是皮肤.
2.不移植用常规输血和去铁,如果条件好病人活到30-40岁没有问题.
如果要移,要近早在肝变大和纤维化之前做.没必要来美国,做的多的都是Thalassemia多
的国家.以下的文献是台湾做的35例非亲属移植,The 5-year OS and thalassaemia-
free survival after the first transplant were 88.3 and 73.9%, respectively.
Bone Marrow Transplant. 2011 Mar 7. [Epub ahead of print]
Unrelated cord blood transplantation for thalassaemia: a single-institution
experience of 35 patients.
Jaing TH, Hung IJ, Yang CP, Chen SH, Chung HT, Tsay PK, Wen YC.
Source
Division of Hematology/Oncology, Department of Pediatrics, Chang Gung
Children's Hospital, Chang Gung University, Taoyuan, Taiwan.
Abstract
Our study was designed to prospectively determine whether or not unrelated
cord blood transplantation (CBT) can produce outcomes comparable to related
donor transplantation for children with β-thalassaemia. In 35 patients, 40
transplants were performed between October 2003 and September 2009. HLA
matching at enrolment was 6/6 (n=8), 5/6 (n=16), 4/6 (n=27), or 3/6 (n=1) by
low-resolution HLA-A, -B, and high-resolution DRB1. These patients received
non-manipulated grafts without ex vivo expansion or T-cell depletion. The
median number of nucleated and CD34+ cells infused was 7.8 × 10(7)/kg (
range, 2.8-14.7 × 10(7)/kg) and 4.0 × 10(5)/kg (range, 1.7-19.9 × 10(5)/
kg), respectively. The 5-year OS and thalassaemia-free survival after the
first transplant were 88.3 and 73.9%, respectively. The cumulative incidence
of TRM at 2 years was 11.7%. Fourteen patients developed chronic skin GVHD.
Thirty patients were alive and transfusion-independent with a Lansky
performance score 80% achieved between 6 and 76 months post transplant (
median, 36 months). These data compare acceptably with the survival rates of
related-donor BMT for thalassaemia and suggest that patients without an
available HLA-compatible sibling but who have well-matched unrelated donors
should also be considered for CBT.Bone Marrow Transplantation advance online
publication, 7 March 2011; doi:10.1038/bmt.2011.39. | w***0
发帖数: 222 | 9 wow, sounds like the "ER" script. Nice. | I****a
发帖数: 407 | 10 You said it right.
【在 w***0 的大作中提到】
: wow, sounds like the "ER" script. Nice.
| | | T***a
发帖数: 457 | 11 谢谢你的回复 你贴的文章很长 我还没来得及读完 我最先来美国就是在芝加哥读的书
！但我不觉得地贫这样的病可以直接送类似cook county hospital 吧？即使拿到签证
不是急诊病人医院会收么？ 我贴的那个意大利的医生和机构你了解么？现在最关键是
解决费用问题 配型已在台湾找到了 美国有什么医院或机构可能做免费的针对地贫患儿
的骨髓移植么？
能否电话联系你咨询一下？请站内邮件联系！谢谢
Sleepcoffee, I hope you are matched in cook county hospital which I believe
it is a grea........
★ Sent from iPhone App: iReader Mitbbs Lite 7.36
【在 I****a 的大作中提到】
: Sleepcoffee, I hope you are matched in cook county hospital which I believe
: it is a great teaching hospital from my personal experience. Dr.Brendan
: Reiley was the department chair when I was round and his morning report was
: second to none, I was almost 顶礼膜拜 each time. It was such as loss as he
: moved to Weill Cornell. It is true patients come straight from airport to
: get treated. Below is what he wrote on JAMA (JAMA. 2004 Sep 8;292(10):1153-4
: . A piece of my mind. In memoriam.)
: The cops bring her here after she collapses in Customs at O'Hare. They don't
: know much about her. She has only the one small bag, not even a change of
: clothes, just a 30-day visa from Nigeria, a one-way ticket from Lagos, and a
| T***a
发帖数: 457 | 12 http://www.fondazioneime.it/index_en.php
有人知道这个在意大利的机构么? 这个 PROFESSOR GUIDO LUCARELLI 是不是很牛的人?
似乎在Nature发过不少论文啊?
不晓得能否申请到美国类似机构的免费手术机会... | T***a
发帖数: 457 | | T***a
发帖数: 457 | 14 听说此手术有15%左右的失败率, 那么失败 = 死亡么? 还是手术失败了依然可以回到以
往靠输血/排铁维持生命的状态呢?
想帮助这个小女孩完成手术的心愿, 但是如果手术死亡率高达15%的话, 我想我会退却
的...
还有什么人做相关研究的么? 请回复给你的建议, 谢谢! | W***M
发帖数: 50 | 15 In the US, it is usually treated with chronic transfusion and iron chelation
. The risk for unrelated bone marrow donor is high, including death, chronic
graft vs host disease, severe immune supppression and risk of infection,
and secondary cancer. The risk is higher with unrelated donor. The Italians
did the most transplant using unrelated donor. Most center here is the US
will do transplant using matched siblings. Also, it is not a surgery. If
transplant failed, it is death. | m******r
发帖数: 1904 | 16 MM 好人品。学习了。
【在 I****a 的大作中提到】
: You said it right.
| T***a
发帖数: 457 | 17 http://www.alifeatime.org/cn/children/story.aspx?id=481
如果手术的确是最好最有效的治疗方法, 我觉得还是值得努力的! 目前她在用输血和吃
排铁药物的方法维持. 真是受罪啊! 她妈妈为了给她找配型的骨髓, 又生了一个弟弟,
可惜没有配上. 幸好终于在台湾找到了配型, 可是手术费又实在太昂贵. 不晓得美国对
这样的病孩是如何治疗的
【 以下文字转载自 Medicine 讨论区 】
发信人: Tanna (天涯), 信区: Medicine
标 题: Re: 求教：重型地中海贫血患儿若作骨髓移植效果如何？
发信站: BBS 未名空间站 (Sun Dec 11 02:22:36 2011, 美东)
今天在网上查到这个地方:
http://www.fondazioneime.it/index_en.php
有人知道这个在意大利的机构么? 这个 PROFESSOR GUIDO LUCARELLI 是不是很牛的人?
似乎在Nature发过不少论文啊?
不晓得能否申请到这里的免费手术机会...
如果我发的板块不对的话, 谁帮忙转到其他相应的板块? 请高人指点一下. 谢谢! | T***a
发帖数: 457 | 18 在网上偶尔看到这个求助的小女孩，感觉很有缘份。因为我自己也是地中海贫血的携带
者，包括我儿子也是。幸运的是我们属于minor, 不需要治疗。很想帮一下这个可爱又
漂亮的小女孩，早日摆脱不幸的命运。不晓得若她接受骨髓移植（已在台湾找到配对）
，预后如何？
因为手术费用相当昂贵，目前似乎没有人愿意捐款。所以想先听听专家的意见，如果是
好的治疗方法，第二步再帮她想办法筹措手术款。不然浪费了捐助者的热心，也苦了孩
子。
http://bbs.yaolan.com/thread_51773840.aspx
有关孩子的详细情况，请看以上帖子。
美国会不会有机构愿意接受这样的小孩，进行免费或者减免费用的手术治疗呢？ | T***a
发帖数: 457 | 19 发一下孩子的照片和医学报告吧, 各位现在或者将来的医生们,请帮忙看一下, 怎么能
帮助到她. 谢谢! | w***0
发帖数: 222 | 20 "..... 不晓得美国对这样的病孩是如何治疗的...."
----No difference. | | | T***a
发帖数: 457 | 21 什么意思啊?
我这个问题发了好几个版了, 至今没有回复. 难道没有人知道有关这个病的治疗么?
【在 w***0 的大作中提到】
: 。
| S**********e
发帖数: 1325 | 22 看到这张孩子的照片，实在忍不住了。说一点我知道的，但其实也没什么用。
我在芝加哥的cook county hospital面试时，听他们自我介绍说他们那里可以看到来自
世界各地形形色色的病人和病种，只因为他们是很大的公立医院。我自己孤陋寡闻，但
是他们说，很多外国病人是千辛万苦搞到签证，芝加哥O'Hare飞机场一落地，直接拉着
箱子到这个医院看病。无论病人有没有支付能力，他们都会给与治疗（我的理解是，那
里的大多数病人其实都是支付不起的）。医学是独立于经济能力之外的，如果病例很有
意思，那么还会得到额外重视（比如大查房）。不知道配型怎么解决。祝好运。 | I****a
发帖数: 407 | 23 Sleepcoffee, I hope you are matched in cook county hospital which I believe
it is a great teaching hospital from my personal experience. Dr.Brendan
Reiley was the department chair when I was round and his morning report was
second to none, I was almost 顶礼膜拜 each time. It was such as loss as he
moved to Weill Cornell. It is true patients come straight from airport to
get treated. Below is what he wrote on JAMA (JAMA. 2004 Sep 8;292(10):1153-4
. A piece of my mind. In memoriam.)
The cops bring her here after she collapses in Customs at O'Hare. They don't
know much about her. She has only the one small bag, not even a change of
clothes, just a 30-day visa from Nigeria, a one-way ticket from Lagos, and a
dog-eared copy of the Koran. No, she hasn't said anything, the cops say.
They seem bored, leave quickly.
In the ED, her temp is 105 but she is cold, her lips and fingers purple.
Dopamine is running when the blood smear returns: no trophozoites or
gametocytes but severe pancytopenia. And bacilli. Gram-positive bacilli. On
the blood smear.
When the pressors kick in, she opens her eyes, looks around. An African
American nurse who looks like her is stabbing at the back of her hand. A
Chinese man hangs bags of honey-colored liquid on a pole above her head. A
Muslim woman shines a light in her eyes, says something about bone marrow. A
bearded man in Sikh headdress and rumpled green pajamas nods yes.
Where am I? she asks.
The nurse answers: At the County, girl. Where you think?
She closes her eyes. Then she says, What country is that?
The good ole youessovay, girl. Where you been?
She closes her eyes again.
The intern's questions begin.
She doesn't answer.
We find the two envelopes in the pocket of her robe. One contains photos: a
park somewhere, a tall, smiling African man wearing a Chicago Bulls cap, an
infant in his arms, two toddlers at his knees. The other contains typed
medical records from a clinic in Nigeria, terse descriptions of "postpartum
anemia" and nondiagnostic bone marrow, and a letter she has written to whom
it may concern with a detailed medical history: months of fatigue, worsening
anemia, consultants' opinions, her own clinical suspicions. She is a
physician.
We do what we can but now she is in and out of consciousness, rambling one
minute, unresponsive the next. Once, she opens her eyes wide and says to no
one: America . . . walk very fast . . . God is great. . . .
We dial up the dopamine.
By dawn she is on Levophed and a ventilator. The bone marrow is all blasts,
Auer rods. Rounds in the ICU take a long time and when the team finally
comes to her, the Heme and ID people are huddled around her bed talking
about options and a nurse next to me at the periphery of the crowd whispers
something about a plane crash in New York but no one pays much attention,
plenty of crashing going on right here. All agree she's between a rock and a
hard place—fulminant sepsis, no clear source, no functioning white cells—
and then the surgeons strut in, say they can't find anything in her belly
and CT, we'll just have to wait and see what happens, and then someone sets
up a portable television at the central nursing station and we gather around
to watch the replay of the second hit on Manhattan, the one that changed
everything.
By midday, her pressors and PEEP are dialed way up and the unit clerk keeps
dialing the TV, watching that second plane over and over again—its sudden
swoop out of nowhere then lost briefly behind the tower (the sky so sunny
and clear, cerulean blue) and then there it is again its nose dipping
slightly down and left, taking aim (hard to believe but there it is, the
plane taking aim) and then it's gone, as if the World Trade Center had
opened giant jaws, swallowed the plane whole and then fumed, furious,
snorting black billows of fire out into that azure sky—and the Muslim
intern and the Sikh fellow are dialing home to see if their loved ones are
safe, they know before the rest of us what this will mean even as Rather and
Brokaw and Jennings speculate on the TV about Hamas and Mogadishu and Osama
, and who might be next, L.A. or Chicago, maybe.
Around noon, the suits arrive. They say they need to see who can go, how
many beds can we empty, the mayor called, we have to be prepared, you know.
They have just done this down in ED and Trauma and Triage and everyone there
looked at them like they were crazy, huge crowds of patients showing up
here unannounced every day, on normal days, what exactly do you have in mind
? We think the same but we walk them through the unit, all 16 beds filled
with patients on ventilators and drips, Rather blathering on the TV about a
new kind of world as we review our own: 5 patients with names like Jefferson
and Roosevelt and Lincoln; 2 Mexicans; a Dominican; 2 Pakistanis; a Pole
and a Russian and a Cambodian; 2 Arabs and the Nigerian doctor with the
Arabic name. When we come to these last three, the Muslim intern keeps her
eyes down, seems to hold her breath. But nothing is said. The suits leave.
Through the day, I try repeatedly to reach my brother, whose office is one
block from Ground Zero. Finally, I get through on his cell phone. He is
walking, north up the FDR Drive, fleeing Manhattan on foot with thousands of
others. One minute he was looking out his office window at the fire 80
stories up and the next thing he knew everything was black, pitch black, all
visibility vanished. He says, I hid under my desk like they taught us in
grade school, remember? That's what I thought it was, Bren, I thought it was
the bomb, whoever thought the whole building could come down? After a while
when he wasn't dead he got up from under his desk, went outside, and
started walking, toward the light. I can't dial out, he tells me. Call Mom.
In the evening in the unit, the doctor is dying. The crowds are gone,
nothing more to do. The nurses have laid out her family photos on the sheets
around her. One doctor stands by her bed. He is not one of the many called
in to see her. No, he says, I just heard about her, through the grapevine,
you know? He looks like her, has a name like hers, and so I understand. We
talk about her clinically. Clostridium something, the lab thinks now,
probably her gut but nothing surgical.
Too little too late, we both agree, not a new experience for either of us
here.
But, unlike me, he has also been there, the place in her photos. He grew up
there. Do you see this park where her kids and husband are standing? A
lovely place, he says, shaking his head, a lovely place. To come here, like
this, now, she must be very brave, he says, fingering the photo of her
infant child.
An awkward silence follows, broken only by the hiss of her ventilator. I
notice he is holding her Koran. I mention this. He says, Yes, I will read
something, it is the way of my people. Then his eyes tear up and he turns
away. This surprises me. Such feeling for a woman he doesn't know? I ask if
he is all right.
He hesitates, then tells me about the phone calls his wife received at home
this afternoon. And what happened to their kids at school today. Vile, ugly
stuff. He skips the details—his voice is British-clipped, urbane, genteel—
but that only makes it sound worse. He says, Of course my wife and I know
this sort of thing, but our kids. . . . He shakes his head, his voice trails
off.
I wonder silently why he is here, not home with his family. He senses this,
then perks up and smiles, his eyes glistening. He names a physician, a
colleague here at the hospital, a native Chicagoan whose brothers are cops
and firefighters. He says they and their families are with his own wife and
kids right now, at his home, just in case. A potluck? he asks tentatively.
Yes, that's it, they're having a potluck. I will go to them shortly, he says
. Nodding at the dying doctor, he says to me: My wife, she understands.
He opens the doctor's holy book. I ask if I should leave. He says, No,
please, and then softly, so that only we can hear, he begins to read aloud.
I don't understand the Arabic words but their sounds in his voice in this
place take me back to a time I had forgotten, when as boys we came from all
around down to the baseball diamonds under the shadow of the Brooklyn Bridge
where, as the sun rose and the fungoes flew and the chatter began hey batta
batta, the Wolfman would begin to sing. That's what the kids called him,
the Wolfman, we had no idea, a mullah, an imam singing from some rooftop
minaret across the river, somewhere in Flatbush maybe, we never knew, but it
seemed to come from very far away, and for a few moments all the kids would
stop to listen, like it was the national anthem or something, the trembling
tenor voice so proud and sure, echoing down the Battery and around Jamaica
Bay, rousing the great immigrant city into a new day, the same psalm sung
that day by others in Casablanca and Damascus and Jerusalem, as their
fathers had done and their fathers before them every day for more than a
thousand years.
Back then, on the ball fields under the bridge, we listened only long enough
to clean our cleats, dust the plate. We never knew the words or why the
Wolfman sang. But here tonight in the County ICU, the doctor's holy book
sings about a river of honey in a valley forever green. I know this because
he reads it again, in English, for me.
In the morning, September 12, she is gone. Someone else is in her bed now, a
gangbanger with HIV. His story is old news. On the TV at the nurses'
station, cameras pan the entrance to a hospital in lower Manhattan. It is
the hospital where I was born, where my son was born. There, outside the
eerily empty ED, a coiffed reporter tries to interview the doctors and
nurses. They're standing around, drinking coffee, waiting. They don't say
much. They want to do something. | I****a
发帖数: 407 | 24 关于这个患病的小女孩,最重要的是要明白这一点: which poison you take?
1. 移植可以根治不管是亲属还是非亲属,但是早期死亡率可以达到10-15%尤其是非亲属
移植.长期存活率虽然可以达到70%以上但有一小部分病人会遭遇移植物抗宿主反应,主
要是皮肤.
2.不移植用常规输血和去铁,如果条件好病人活到30-40岁没有问题.
如果要移,要近早在肝变大和纤维化之前做.没必要来美国,做的多的都是Thalassemia多
的国家.以下的文献是台湾做的35例非亲属移植,The 5-year OS and thalassaemia-
free survival after the first transplant were 88.3 and 73.9%, respectively.
Bone Marrow Transplant. 2011 Mar 7. [Epub ahead of print]
Unrelated cord blood transplantation for thalassaemia: a single-institution
experience of 35 patients.
Jaing TH, Hung IJ, Yang CP, Chen SH, Chung HT, Tsay PK, Wen YC.
Source
Division of Hematology/Oncology, Department of Pediatrics, Chang Gung
Children's Hospital, Chang Gung University, Taoyuan, Taiwan.
Abstract
Our study was designed to prospectively determine whether or not unrelated
cord blood transplantation (CBT) can produce outcomes comparable to related
donor transplantation for children with β-thalassaemia. In 35 patients, 40
transplants were performed between October 2003 and September 2009. HLA
matching at enrolment was 6/6 (n=8), 5/6 (n=16), 4/6 (n=27), or 3/6 (n=1) by
low-resolution HLA-A, -B, and high-resolution DRB1. These patients received
non-manipulated grafts without ex vivo expansion or T-cell depletion. The
median number of nucleated and CD34+ cells infused was 7.8 × 10(7)/kg (
range, 2.8-14.7 × 10(7)/kg) and 4.0 × 10(5)/kg (range, 1.7-19.9 × 10(5)/
kg), respectively. The 5-year OS and thalassaemia-free survival after the
first transplant were 88.3 and 73.9%, respectively. The cumulative incidence
of TRM at 2 years was 11.7%. Fourteen patients developed chronic skin GVHD.
Thirty patients were alive and transfusion-independent with a Lansky
performance score 80% achieved between 6 and 76 months post transplant (
median, 36 months). These data compare acceptably with the survival rates of
related-donor BMT for thalassaemia and suggest that patients without an
available HLA-compatible sibling but who have well-matched unrelated donors
should also be considered for CBT.Bone Marrow Transplantation advance online
publication, 7 March 2011; doi:10.1038/bmt.2011.39. | w***0
发帖数: 222 | 25 wow, sounds like the "ER" script. Nice. | I****a
发帖数: 407 | 26 You said it right.
【在 w***0 的大作中提到】
: wow, sounds like the "ER" script. Nice.
| T***a
发帖数: 457 | 27 谢谢你的回复 你贴的文章很长 我还没来得及读完 我最先来美国就是在芝加哥读的书
！但我不觉得地贫这样的病可以直接送类似cook county hospital 吧？即使拿到签证
不是急诊病人医院会收么？ 我贴的那个意大利的医生和机构你了解么？现在最关键是
解决费用问题 配型已在台湾找到了 美国有什么医院或机构可能做免费的针对地贫患儿
的骨髓移植么？
能否电话联系你咨询一下？请站内邮件联系！谢谢
Sleepcoffee, I hope you are matched in cook county hospital which I believe
it is a grea........
★ Sent from iPhone App: iReader Mitbbs Lite 7.36
【在 I****a 的大作中提到】
: Sleepcoffee, I hope you are matched in cook county hospital which I believe
: it is a great teaching hospital from my personal experience. Dr.Brendan
: Reiley was the department chair when I was round and his morning report was
: second to none, I was almost 顶礼膜拜 each time. It was such as loss as he
: moved to Weill Cornell. It is true patients come straight from airport to
: get treated. Below is what he wrote on JAMA (JAMA. 2004 Sep 8;292(10):1153-4
: . A piece of my mind. In memoriam.)
: The cops bring her here after she collapses in Customs at O'Hare. They don't
: know much about her. She has only the one small bag, not even a change of
: clothes, just a 30-day visa from Nigeria, a one-way ticket from Lagos, and a
| T***a
发帖数: 457 | 28 http://www.fondazioneime.it/index_en.php
有人知道这个在意大利的机构么? 这个 PROFESSOR GUIDO LUCARELLI 是不是很牛的人?
似乎在Nature发过不少论文啊?
不晓得能否申请到美国类似机构的免费手术机会... | T***a
发帖数: 457 | | T***a
发帖数: 457 | 30 听说此手术有15%左右的失败率, 那么失败 = 死亡么? 还是手术失败了依然可以回到以
往靠输血/排铁维持生命的状态呢?
想帮助这个小女孩完成手术的心愿, 但是如果手术死亡率高达15%的话, 我想我会退却
的...
还有什么人做相关研究的么? 请回复给你的建议, 谢谢! | | | W***M
发帖数: 50 | 31 In the US, it is usually treated with chronic transfusion and iron chelation
. The risk for unrelated bone marrow donor is high, including death, chronic
graft vs host disease, severe immune supppression and risk of infection,
and secondary cancer. The risk is higher with unrelated donor. The Italians
did the most transplant using unrelated donor. Most center here is the US
will do transplant using matched siblings. Also, it is not a surgery. If
transplant failed, it is death. | m******r
发帖数: 1904 | 32 MM 好人品。学习了。
【在 I****a 的大作中提到】
: You said it right.
| T***a
发帖数: 457 | 33 跟踪这个孩子2年了,现在得到消息基本安排在下个月在广州南方医院进行移植手术.求
祝福~~
【在 T***a 的大作中提到】
: http://www.fondazioneime.it/index_en.php
: 有人知道这个在意大利的机构么? 这个 PROFESSOR GUIDO LUCARELLI 是不是很牛的人?
: 似乎在Nature发过不少论文啊?
: 不晓得能否申请到美国类似机构的免费手术机会...
| d*****i
发帖数: 73 | 34 祝福，可爱的孩子！
【在 T***a 的大作中提到】
: 跟踪这个孩子2年了,现在得到消息基本安排在下个月在广州南方医院进行移植手术.求
: 祝福~~
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