【求助】如何解决此维持性血液透析患者血管通路问题，并寻求导管植入血透方法（非专业，已锁）

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actoys 原公告地址
http://www.actoys.net/bbs/read.php?tid=153293

ACTOYS关于广泛寻求导管植入透析治疗方法的紧急公告

国内知名的变形金刚网站TFCLUB的站长"星星叫"(冯明）身患严重肾病十多年，由于长期透析治疗，于近日出现严重并发症，生命危在旦夕。据治疗专家称，需要做导管植入方可继续治疗。但星星叫需要植入的长度超出常规（超过６０ｃｍ），国内外都史无前例，专家们始终没能找到突破性的资料。不过资料显示，国外的导管的质量、手术的成功率都大大高于国内。而上海，北京的相关专科医院，都和欧洲有过交流，希望有朋友能帮忙寻找这类医院，并通过病例，给出意见，或者直接找到高明的大夫进行手术。

做为与星星叫多年的挚友，我们通过dxy正式向国内外的相关领域专家发出呼吁：

请大家利用自己的一切关系、一切可能，寻找这方面的信息，寻找治疗方法！时间紧迫，我们恳请每位朋友都能够伸出援手，我们相信，ACTOYS的两万五千用户，加上看到这个信息的更多的朋友们，一定能够汇聚成不可阻挡的力量，让奇迹出现！

TILL ALL ARE ONE ！！！！！

联系电话：13828471722　冯明

详细病情及病史如下。

ACTOYS在此向各位致以诚挚的谢意。

七面兽 星尘

====================================

冯明 男 1978年6月16日出生 汉族 广州人

Feng, Ming

Gender: Male
D.O.B: June 16th 1978
Nationality: China
People: Han
Residency: Guangzhou

主要病史
Main case history:

7个月左右 被发现患有 双肾母细胞瘤 作手术切除全部右肾及2/3左肾 手术成功 肾功能残余1/6 左1/3肾代偿良好

About 7 months old:
Wilm’s tumor (nephroblastoma) detected in both kidneys; the whole right kidney and two thirds of left kidney operated with nephrectomy. After this operation, only one sixth of the kidney function left; one third of the left kidney worked well.

童年 先后做过两次隐睾手术

Childhood:
“Undescended testis”, operated twice;

1995年10月 开始出现浮肿 肾性高血压 慢性肾炎等症状入院保守治疗

October 1995:
Some symptoms occurred, including dropsy, kidney hypertension; chronic nephritic syndrome etc; treated in hospital.

1995年11月 急性阑尾手术切除 手术成功 但肾脏进一步损坏 需要进行透析治疗 于右锁骨下静脉插管进行透析 同时在左手肱动脉造瘘以长期透析 手术成功 瘘使用后插管拔除 但穿刺一直比较困难 需要专人定点穿刺

Noember 1995:
Acute appendicitis, operated successfully; but the kidney was further damaged; must be treated with hemodialysis: a catheter was plugged into the ein below the right claicle for hemodialysis; meanwhile, a natie a fistula was deeloped in the humerus artery of the left hand for long-term dialysis; the operation was successful; after the catheter was unplugged, the fistula worked well, but the piercing was always pretty tough, which needed assistance from specialists.

1998年8月 左手形成假性动脉瘤 手术切除成功 活检发现瘤为钙化纤维物质 瘘仍然能使用但左手开始逐渐浮肿不消

August 1998:
A pseudo-aneurysm found in left hand, which was operated successfully; the tumor was identified as calcified fibers; the fistula still worked but the renal edema on the left hand became worse

2004年8月 左手肿胀严重无法穿刺透析 于右颈内静脉插管进行透析 同时手术结扎左手的瘘 在右手肱动脉造瘘 手术后右手持续不消肿 后经造影检查发现右边锁骨下静脉狭窄导致回流障碍 于左颈内静脉插管进行透析

August 2004:
The renal edema on the left hand made the piercing-dialysis undoable; a catheter was plugged into the ein in the right neck for dialysis; the fistula in the left hand was ligated; another fistula was deeloped in the humerus artery in right hand; after the operation, the right hand swelled all the time; inspection figured that the narrowness of the ein below the right claicle preented the refluence of blood; a catheter was plugged into the ein in the left neck for dialysis

2005年11月 左颈静脉插管堵塞 于右颈静脉插管透析 同时在左大腿大隐静脉接股动脉造瘘 手术成功 结扎右手瘘 手术不成功 右手情况恶化

Noember 2005:
The catheter in the ein in the left neck got congested; the catheter was moed to right neck for dialysis; a traumatic arterioenous fistula was deeloped at the intersection of the left thigh ein and left thigh artery; the operation was a success; howeer, the fistula in right hand was ligated unsuccessfully; right hand got een worse;

2006年3月 右手再次结扎手术 手术成功 尝试插管但不成功大腿瘘开始穿刺使用 疼痛异常 穿刺难度也很大

March 2006:
The fistula in right hand was ligated again; the operation was a success; a catheter was tried but not successful; the fistula on the left thigh was used for piercing-dialysis; the piercing was pretty touch and ery painful;

2006年12月 左大腿形成假性动脉瘤并引发大出血 手术止血 手术成功但瘘被结扎 目前休养中 目前依靠右手动脉直接穿刺来透析 无法保证每次穿刺成功 一旦不成功将无法透析

December 2006:
Another pseudo-aneurysm found in left thigh, which resulted in massie haemorrhage; the haemorrhage was stopped but the fistula was ligated;
At present, the dialysis is conducted through direct piercing of the artery in right hand; the success of piercing cannot be guaranteed; once fails, the dialysis will be undoale.

主要问题
1）无法再造瘘 双手及左腿都已做过 右腿再做风险太大
2）插管困难 颈内静脉由于插过多次已产生疤痕狭窄 尝试过再插不成功 右边锁骨下静脉已知狭窄不行 左边锁骨下静脉离心脏太近 左股静脉已伤 右股静脉只可插临时管道 长期置管则无法达到足够长度且容易堵塞及感染 影响行动

Main issues:
1) Unable to deelop natie fistula: fistulae made on both arms and left leg but all failed; too risky to take the right leg;
2) Difficult to plug in the catheter: the ein inside the neck has been plugged so many times that it is too narrow to use, the ein below the right claicle is also too narrow, the one under the left claicle is too close to the heart. The ein in the left thigh is damaged; the one in the right thigh can only allow temporary catheter. Long-term catheter is not long enough and gets congested and infected easily, which will constraint the motion of the body.

主要求助
1）长期置管的手术技术及术后日常护理经验
2）长期置管的器材选择

Assistance needed in the following:
1) Operation techniques of long-term catheter implanting; experience of post-operation nursing;
2) Selection of long-term catheter types

说明：
1）本人腹部手术多 无完整腹膜 不能进行腹膜透析
2）群体抗体过高（PRA）无法进行肾移植配型
3）丙肝病毒携带者（HC+）
4）一些数据；血色素长期为8-9克 现在手术后仅为7克左右；血压偏高 平均200-220/100-120（下肢） 药物控制效果不强 低于150/80就会晕厥；先锋4 先锋6过敏；酒精过敏；虾蟹过敏；（输液管过敏：此点最重要每次输液必须把管道内空气完全排空并用生理盐水清洗）

Notes:
1) The patient’s abdomen has been operated many times; the peritoneum is incomplete, therefore peritoneal dialysis cannot be conducted;
2) High PRA, matched kidney transplant operation is not suitable
3) HC+ carrier
4) Some useful data: Long term heme protein is 8-9 grams; after operations, it falls to 7 grams approximately; blood pressure is high, on aerage 200-220/100-120 (lower limbs); medicine control doesn’t work well; if the blood pressure falls lower than 150/80, the patient will faint; allergic to Cefalexin and Cefradine; allergic to alcohol, shrimps and crabs; allergic to transfusion tube, which means before each transfusion, the air in the tube must be exhausted and the tube itself must be cleaned with physiologic brine;

acute appendicitis急性阑尾炎
chronic慢性
hemodialysis血透
aneurysm动脉瘤
（partial）nephrectomy （部分）肾切除术
nephroblastoma（Wilms’s tumor）肾母细胞瘤
renal edema 肾性水肿
traumatic arterioenous损伤性动-静脉造瘘

可以尝试做锁骨下静脉置半永久管，或者人造血管手术

建议行人造血管手术.可到上海长海医院找叶朝阳教授.

建议尝试颈外静脉置管,可联系上海长征医院肾内科张玉强主任.

这个英文翻译显然不是专业人士做的,错漏较多,不过中文的摘要基本问题还是比较清楚.
建议: 左上肢的血管造影确认无狭窄以后,在左上肢肘部做loop型的人造血管,如果仍出现吻合口后纤维增生狭窄,可再作jump型人造血管.
所谓的永久性的置管都不可能永久, 只能作为过渡使用; 置管过久出现深静脉狭窄会导致造瘘和人造血管手术失败.
如果左侧深静脉也有狭窄, 那么要观察双上肢深静脉狭窄的部位, 选择适合的一侧进行介入手术, 扩张或置换狭窄的病变静脉,在此基础上做肘部的人造血管.

广州的，去南方医院找张训和侯凡凡教授。

国内在血液透析血管通路最有造诣的是上海长征医院肾内科,叶朝阳教授主编过国内第一部<血液透析血管通路的理论与实践>专著,近年来多次举办血管通路的国家级继续教育学习班,多次在全国会议上做有关问题的专题报告.在各种复杂血管通路的建立方面有丰富的经验.长期导管置入术国内手术例数最多的就是该科室.
长征医院总机电话021-63610109.
另外再给你医院几个参考:
如果要行人造血管,还可以找上海仁济医院血管外科的张纪蔚教授
如果行难度较高的自体内瘘,还可以找上海455医院肾内科的陆石教授