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标题: 分享一个骨髓移植54年的幸存者的故事,给人希望 [打印本页]

作者: 涛声依旧    时间: 2017-4-11 06:39     标题: 分享一个骨髓移植54年的幸存者的故事,给人希望

Nancy's story

Her medical history reads like a fascinating chapter in the history of medicine. The recipient of a bone marrow transplant in 1963, Nancy King McLain is the world’s longest living bone marrow transplant survivor.  

"I'm not the oldest survivor," Nancy reminds, "I've just been around the longest."

The physician who performed Nancy's transplant as his very first, Robert Kyle, MD, of Mayo Clinic, remains her doctor today.  It's not often he gets to follow a patient for over 50 years, he told Nancy on her last visit.  Nancy says that it's also not often one has an octogenarian hematologist who still works five days a week, takes the stairs to his sixth floor office to get his exercise and remains an inspiration.

1960           

In 1960, on her first trip to Disneyland with her family, seven-year-old Nancy showed her mom a pillow stained with blood coming from her gums.   The family went home and took Nancy to the dentist who sent her to a doctor who diagnosed Nancy with rheumatic fever and ordered her to bed for two months.  

Already grounded too long by her illness, Nancy was not happy when the same doctor sent her to Mayo Clinic when she didn't recover.  She was bursting to get back to her active life of besting the boys in the neighborhood with her twin sister, Bonnie.  But it was three more years before Nancy was back to outrunning the neighbor boys in her hometown of Canby, Minnesota.

Instead, it was a life in those years of 180 mile commutes to Mayo for needles, pain, and scars.  Each car ride was marked with bleeding from her nose and mouth so profuse that three sets of bed sheets were needed to stop its flow on the road.

At Mayo, doctors undertook to save Nancy's life with whatever resources they had at the time.  There were blood transfusions. "I had 98.  My mom kept count," Nancy says.

There were medications, like prednisone, which altered her growth.  She had biopsies taken with big, painful needles from her chest while awake, leaving intense scarring.  Nancy calls these days the dark ages in comparison to how bone marrow transplant patients are treated now.

Her spleen was removed in order to increase her platelet count.  Blood was withdrawn, Nancy recalls, and mixed with "all kinds of things and then put back into me."

Nothing worked.

"I was given last rites twice," Nancy says, "because I was not supposed to make it through the night a few times when I was sick."   

And then one day at the clinic, as Nancy's sister Bonnie ran around, Dr. Kyle inquired who the lively little girl was.  She looked markedly different than Nancy, whose appearance had dramatically changed from medication.  A new piece of information emerged that had somehow escaped her doctors in those days:  Nancy had an identical twin sister.  Bone marrow transplantation was just starting to be explored and only with identical twins. It had never been done successfully at Mayo in 1963.

It was a last ditch effort, Nancy says, that the very young hematologist was called upon to perform.  Dr. Robert Kyle had received a short training from Dr. E. Donnall Thomas, now known as the father of bone marrow transplantation, at the Mary Imogene Bassett Hospital, in Cooperstown, New York.  In those days, there were no blood tests to confirm that a patient and donor were a match.  Instead, Nancy and Bonnie each had a piece of tissue from their own hand, grafted onto the other's hand to make absolute sure they were identical twins.  There was no rejection.  It was a perfect match.

Six weeks of isolation later, Nancy was sprung.

"I remember the boredom of those weeks, waiting," Nancy says.  "And there was no Ronald McDonald House or Make-A-Wish to distract me."

The illness, drama, long rides and bleeding stopped on that June day of her transplant in 1963.  There was no more bleeding and no side effects.  She was a twin sister again, with an ordinary life, running and biking faster than the boys.

A life saved is not only about that one life, but all the lives that are later affected, like the elementary school children whom Nancy taught, and the high school children with autism whom Nancy helped with her innovative program that started in one school and soon went to four.  

That Nancy's life was saved meant the birth of her two children and two grandchildren.

Nancy has been asked to tell her story at places like an international symposium in San Diego where she was celebrated like a star.

"Who knew you could be famous for growing old," she jokes.

Today, Nancy waits impatiently for more grandchildren, travels, and takes time to smell the coffee.  She once prayed to live to be an old woman who was sweeter and better rather than older and bitter.  She has succeeded.

Nancy is grateful to many but most especially to her two heroes:  Dr. Robert Kyle, who gave her life back to her, and her sister, Bonnie, who agreed at 10 years old to donate marrow to save her twin’s life.
作者: minye1104    时间: 2017-4-11 08:12

南茜的故事
她的医学史读起来就像医学史上迷人的一章。一个骨髓移植1963者,Nancy King McLain是世界上最长寿的骨髓移植存活者。
“我不是最老的幸存者,”南茜提醒说,“我只是呆的时间最长。”
作为梅奥诊所的南茜,Robert Kyle,MD的医生,今天仍然是她的医生。他在过去的一次访问中告诉南茜说,他不经常跟随病人超过50年。南茜说,这也不是经常有一位八十多岁的血液学家仍然每周工作五天,走楼梯到他的第六楼的办公室让他锻炼和保持一个灵感。
一千九百六十
1960,她第一次和家人一起去迪斯尼乐园时,七岁的南茜给妈妈看了一个沾满鲜血的枕头。一家人回到家,带南茜去看牙医,医生把她送到一位医生,医生诊断南茜患有风湿热,并嘱咐她卧床两个月。
由于生病,她已经接地太久了,南茜不高兴的时候,同样的医生把她送到梅奥诊所当她没有恢复。她迫不及待地回到自己的生活好于男孩和她的孪生妹妹附近,邦妮。但是直到三年前,南茜又在邻居的男孩在她的家乡Canby,明尼苏达。
相反,它是一个生活在那些年里,180英里往返于Mayo针,疼痛和疤痕。每一辆车上都有鼻子和嘴上的出血,以致于需要三张床单来阻止它在路上的流动。
在Mayo,医生们用他们当时所拥有的资源来拯救南茜的生命。有输血。”我有98。我妈妈一直在数,“南茜说。
有药物,如强的松,改变了她的成长。她在醒着的时候用大而痛苦的针在胸部取出,留下强烈的疤痕。南茜称如今的黑暗时代与骨髓移植患者如何治疗相比。
为了增加血小板计数,她切除了脾脏。血被撤回,南茜回忆说,并与“各种各样的东西混合,然后放回我。”
没有工作。
南茜说:“我被给予了最后的两次仪式,因为我不应该在我生病时几次通过这个晚上。”
有一天,诊所里,南茜的姐姐邦妮跑来跑去,Kyle医生问那个活泼的小女孩是谁。她看上去和南茜明显不同,她的外表从用药上戏剧性地改变了。那时候南茜医生有一个一模一样的孪生妹妹,一个新的信息出现了。骨髓移植刚刚开始探索,只有同卵双胞胎。它从来没有成功地在Mayo在1963。
这是最后的努力,南茜说,那很年轻的血液被要求执行。Robert Kyle博士从E. Donnall Thomas博士接受短期培训,现在被称为骨髓移植之父,在玛丽伊莫金巴塞特医院,库珀斯敦,纽约。在那些日子里,没有血液测试,以确认病人和捐赠者是一个匹配。相反,南茜和邦妮各自从自己的手里拿了一块纸巾,嫁接到另一只手上,以确定它们是同卵双胞胎。没有排斥反应。这是一场完美的比赛。
六个星期的隔离后,南茜。
“我记得那些星期的无聊,等待,”南茜说。没有罗纳德McDonald House或许愿来分散我的注意力。”
在她1963年的器官移植的那一天,疾病、戏剧、长途旅行和流血停止了。无出血,无副作用。她又是双胞胎姐妹了,有着普通的生活,跑步和骑自行车比男孩快。
一个得救的生命,不仅是一个生命,但所有的生命,后来受到影响,像小学的孩子,南茜教授,高中自闭症儿童,南茜帮助她的创新计划,开始在一所学校,很快就到了四。
南茜的生命得救意味着她的两个孩子和两个孙子的诞生。
南茜被邀请在圣地亚哥的一个国际研讨会上讲述她的故事,在那里她像明星一样被庆祝。
“谁知道你会因为变老而出名,”她开玩笑说。
今天,南茜不耐烦地等待更多的孙子,旅行,并花时间闻咖啡。她曾经祈祷过成为一个比以前更老更苦的老妇人。她成功了。
南茜很感激很多人,但最重要的是对她的两个英雄:Robert Kyle博士,谁给了她的生命回到她,和她的妹妹,邦妮,谁同意在10岁捐赠骨髓,以挽救她的双胞胎的生命。
百度翻译。
作者: Lisa74    时间: 2017-4-16 19:26

在移植五周年纪念日看到这篇文章,真的很感动!加油,战友们
作者: uming    时间: 2017-5-1 09:21

加油!




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