Living Testament

移植接受者萨拉·凯瑟琳·史密斯是儿科肝脏移植的新任医学主任,她对患有晚期肝病意味着什么有着来之不易的看法.

萨拉·凯瑟琳·史密斯|莱西·约翰逊摄

Sara Kathryn Smith provides hope to young patients and their families in a way that few doctors can. 约翰·霍普金斯儿童中心儿科肝脏移植的新医学主任, 作为一名儿科胃肠病学家,她不仅以自信的诊断和丰富的经验让父母们放心,而且她是肝脏移植接受者所能取得成就的活生生的证明.

史密斯在17岁时意外地开始了自己动荡不安的医疗历程,这一历程持续了数年. 她的个人经历让她对年轻患者及其家人经历晚期肝病的起起落落意味着什么有了一个来之不易的视角:在移植名单上焦急地等待, the hope that a new liver can bring and the disappointment when a transplant doesn’t take.

“作为一名移植接受者,凯瑟琳对器官移植和器官衰竭的情况有了独特的了解, 你不知道接下来会发生什么,也不知道带着移植器官生活的巨大责任,” says Elizabeth King, the surgical director of pediatric transplant at Johns Hopkins Children’s Center. “能够以这种方式与患者建立联系是非常罕见的.”

‘We Can Handle It!’

Smith’s liver troubles began one evening in her junior year of high school, 就在她参加完科学竞赛回家后不久. She had pain in her stomach and threw up blood the following morning. 她妈妈带她去了急诊室. There, 医生确定她的呕吐是由食管静脉曲张出血(食管静脉扩张)引起的。, 当血液流向肝脏受阻时,通常会出现这种情况. The underlying diagnosis was cirrhosis, a chronic disease that leads to scarring of the liver. In Smith’s case, 肝硬化是由自身免疫性肝炎引起的, 一种炎症性肝病,大约100人中有3人患病,000 children. 来治疗她的症状, surgeons inserted a shunt that allowed blood to flow past the scarring in her liver.

在一段时间内,这种治疗奏效了. 史密斯感觉很好,从她的家乡奥古斯塔搬到亚特兰大,在佐治亚理工学院学习生物学. 但在她大一开学几个月后, 她的分流管堵塞了, 她的医生认为她需要肝脏移植. While she waited on the liver transplant list, Smith returned to her college studies. 在她大二的秋天,她兴奋地得知她将接受新的肝脏. 但她的解脱是短暂的. 移植失败的原因是肝动脉血栓形成——这是一种相当常见的并发症,在为新器官供血的动脉中形成血块.

Four weeks later, 史密斯在亚特兰大的埃默里大学医院接受了第二次肝脏移植手术. She expected to come out of anesthesia later that day with a liver that finally worked. Instead, she awoke from a medically induced coma two months later at Jackson Memorial Hospital in Miami, Florida. “我不知道自己身在何处. 我醒来的时候气管被切开了,所以我不能说话. And then my mom told me, ‘You are going to need another transplant,’” she remembers.

史密斯的第二次移植手术也失败了, 因为她的肠系膜上动脉形成了罕见的血栓, 是什么为肠道提供血液和营养. The emergency measures taken to keep her alive had damaged multiple organs, 她需要再做一次大手术才能活下来. This time, 外科医生给史密斯换了一个新胃, pancreas, kidney, 小肠和第三个捐献的肝脏.

“It was very tough. 你要学会欣赏小事, 它会给你一个完全不同的视角,” remembers Smith, who spent nine months in the intensive care unit relearning how to walk, 在最后一次手术后,她自己说话和吃饭. “我真的很害怕, but my mom would take it away by insisting there was no reason to be afraid. She was so positive. 她总是说:‘你能做到的! We can handle it!’”

在她漫长的康复过程中, 史密斯和她的医生们结下了深厚的友谊, 杰克逊纪念医院的外科医生和护士, 其中有几个人在她走向医学事业的道路上给予了指导. 许多人认为史密斯的职业轨迹是受到她自己作为推荐十大正规网赌平台的经历的启发, 但她坚持认为情况并非如此. 化学家和科学老师的女儿, she says her heart was set on becoming a doctor since she was 5 years old. “我从来没有考虑过其他的想法,”她说. “我决心无论如何都要成为一名医生.”

A New Lease on Life

器官移植后, 尚不清楚史密斯能否实现她成为一名医生的长期梦想. To ensure a patient’s immune system doesn’t attack their donor organ, transplant recipients must take immunosuppressive drugs for the rest of their lives. Over time, 这些药物会导致一系列的医疗问题, including anemia, blood clots, kidney damage, high blood pressure, 糖尿病和骨质疏松. 幸运地避免了这些副作用的患者,免疫系统仍然受损, 对于在工作中可能接触到传染病的医疗专业人员来说,哪一种尤其危险.

当史密斯进入医学院时, 她考虑学习放射学或病理学, 这样她就能尽量减少与推荐十大正规网赌平台的接触. 但她很快意识到,她太外向了,不适合整天在实验室里分析x射线或细胞培养. Then, during her second-year rotation in pediatrics at the Medical College of Georgia, she unexpectedly found her calling in pediatrics while working in a small practice in Aiken, South Carolina.

“It was my last rotation, and about two weeks in, I realized how much I enjoyed it. 这完全出乎我的意料, 因为在那之前我从来不认为自己是一个喜欢孩子的人,” she says.

史密斯在迈阿密问她的外科医生,他对她从事一项需要和生病的孩子在一起的职业有什么看法, 于是他祝福了她. 然而,并不是每个人都支持. “People said, ‘How are you going to be a doctor if you’re immunosuppressed?’ Or they told me to choose an easy pediatrics job and live in the countryside. But I felt like I had a whole new lease on life after my transplants. 我想自己弄清楚我能处理什么,”她说.

事实证明,她可以处理很多事情. In 2009, 史密斯回到迈阿密大学完成她在杰克逊纪念医院的实习, 随后在加州大学圣地亚哥分校获得胃肠病学儿科奖学金. 在加州大学旧金山分校(UCSF)获得儿科移植肝病学第二个奖学金后, 2016年,她被聘为该校贝尼奥夫儿童医院的主治医生.

Then, in late 2020, she accepted a position back at the University of Miami. 尽管给她做移植手术的主要外科医生已经退休了, 她有机会与20年前治疗过她的一些临床医生一起工作, including a senior surgeon who was a brand-new fellow when Smith was a patient in 1999. “他就像我的兄弟一样. 这是一种完整的循环体验,”她说. “He took care of me when I was so sick, and then there we were, working side by side.”

As fitting as it felt to be back in Miami, the move was short-lived.

An Eye on Expansion

Douglas Mogul, Johns Hopkins’ former medical director of pediatric liver transplantation, 他去年联系了史密斯,想面试他在约翰霍普金斯儿童中心的职位. He was leaving the hospital and looking for someone to continue his legacy, 还有他导师的遗产, Kathleen Schwarz, 他是儿童中心的前儿科消化内科主任和第一任儿科肝脏移植主任. Part of 他们的愿景是发展这个项目 and make Johns Hopkins one of the country’s top destinations for pediatric liver transplants.

作为曾在加州大学旧金山分校和迈阿密大学工作过的人,史密斯似乎是这份工作的理想人选,这两家医院都是儿科移植中心. After conducting a national search and reviewing resumes from a number of qualified doctors, the team at the Children’s Center agreed that Smith was indeed the perfect fit.

“我没打算搬家, 但所有的星星都排成一行,” says Smith, 她和她现在的未婚夫——一个她在高中认识的,碰巧住在巴尔的摩的男人——有一段异地恋. “在约翰霍普金斯大学工作的机会好得令人难以置信. The people here are fantastic, and I always wanted to be able to build a program. 有时我觉得我必须掐一下自己,”她说.

Since starting at Johns Hopkins Children’s Center earlier this year, Smith has been working to expand the pediatric liver transplantation program, 她的努力已经初见成效. 儿童中心计划在2022年完成12例移植手术,是医院传统移植数量的两倍多. Many of those patients have been referred by Smith’s peers at other hospitals, who often turn to her for advice on whether their patients need liver transplants.

“凯瑟琳有能力听到一个患有肝病的孩子,并立即知道他们需要什么,” says King, 儿童中心的顶级移植外科医生之一, 谁和史密斯工作密切. “她知道什么时候把它们带到这里,并以一种令人印象深刻的方式将它们插入我们的系统. Our program is benefiting from that level of expertise and confidence.”

来应对不断增加的移植量, 史密斯计划在未来几个月雇佣更多的医生. “霍普金斯大学的声誉将有助于吸引患者, 但我们也必须组建一支有动力的团队,” she says. “我们所在的地区竞争激烈,有许多顶级医院, 所以在某种程度上让自己与众不同是很重要的.”

One area where the Children’s Center’s liver transplant program shines is research. Young patients have the opportunity to participate in a number of cutting-edge clinical trials, including the testing of novel drugs designed to treat cholestatic liver diseases, 哪些会导致营养不良, 瘙痒(皮肤发痒)和进行性肝损害. 约翰霍普金斯大学的许多新疗法都有可能延缓肝脏疾病的进展,并最终改变儿童治疗的格局.

史密斯自己的研究重点是儿科肝移植受者的长期结果,并寻找改善他们生活质量的方法. “The number one question I get from people is, ‘Why did you do so well? 为什么你的移植手术这么成功?’” says Smith, who, with the exception of partial hearing loss caused by her medications, 移植手术后病情好转了吗. “为什么有些推荐十大正规网赌平台做得很好,有些却不行?? 这也是我想弄明白的.”

除了最新的治疗方法和技术, 约翰霍普金斯儿童中心拥有进行肝脏移植和治疗任何可能出现的术后并发症的最先进的设施, 比如史密斯经历的动脉血栓形成.

它也是活体供体移植的顶级项目, in which a healthy person donates a piece of his or her liver to someone with liver disease. Living donor transplants are especially helpful for treating infants and toddlers, as they are less likely to find a size-matched liver from a deceased donor, partly because parents must grant permission for their child’s organs to be donated. 因为肝脏有独特的再生能力, a piece of adult liver that is transplanted in a child can grow to full size, 捐赠者的肝脏也会再生.

罕见的医生

约翰霍普金斯大学儿科肝脏移植项目的另一个关键优势是其个性化护理水平, which colleagues say has been strengthened since Smith came on board.

“Without a doubt, she can empathize more than anybody with what children and families are going through,” says Maria Oliva-Hemker, 儿科消化内科主任, 约翰霍普金斯儿童中心肝病学和营养学教授. “她是一个很好的同事. 她对工作的热情和激情是有感染力的.”

金说,今年早些时候她意识到史密斯很特别, 凌晨两点,她发现她躺在一个病重婴儿的床边.m. “我去看看推荐十大正规网赌平台, 凯思琳已经在那里了, 安抚这个小婴儿的妈妈,安慰这个小婴儿,” remembers King. “一个医学主任在那个时候出现真是太令人惊讶了. It let me know, as a surgeon, that this is someone I can rely on to support me and our patients without limits. 那种医生很少见.”

史密斯说,她喜欢用从母亲那里学来的积极进取的态度来对待她的推荐十大正规网赌平台. “我不是那种讨人喜欢的医生. 我很安心,但我有很多冷静的自信,”她解释道. “I know from being a patient that it’s important to be direct, while also providing hope.”

For Smith, 拯救一个孩子的生命,看到父母的感激之情是世界上最好的感觉之一. “当你给一个垂死的婴儿一个新的肝脏, and a couple days later they are looking at you and smiling — it’s overwhelming. The ability to successfully perform these transplants is a miracle of modern medicine. 我喜欢参与其中.”