Ray Groth's first significant interaction with University of Utah was in the 1960s as a student and football star. He came to Salt Lake City from Idaho Falls as a starting quarterback, and in 1970 the St. 路易斯红雀队选中了他. He didn't make it in the NFL, but that didn't end his passion for football. 留在他热爱的比赛中, 他开始做教练, 首先是在高中阶段, 然后在大学里, 同时和妻子Deidra一起抚养三个孩子.
雷一直很喜欢健身, 当艰苦的足球训练结束时, 他开始跑马拉松. His brother eventually got him into cross-country skiing, where he excelled. During a cross-country training session about four years ago, he first noticed a problem.
[在一次比赛中,我起飞了，看到前面有个人，我就想, “我要试着跟上他。”. 我走到第一个小山就跑开了. That was a struggle, and it shouldn't be—races are hard, but not that hard."
他不确定到底是什么问题, but having spent much of his life pushing his body to its physical limits, 他知道有些不对劲. He went to a doctor for some tests, but they couldn't find anything.
Things continued to deteriorate for Ray during the winter of 2017. "I took off one day skiing with my wife and I couldn't keep up with her," he said. “我无法呼吸. I had a race three days later and nearly passed out on the course."
That was the catalyst for his second significant interaction with U of U, this time at 大发娱乐. 他看见 Dr. 罗杰弗里德曼, a cardiologist who put him through a series of tests and noticed on the MRI that Ray's heart walls were thickening. Dr. 弗里德曼打电话给他的同事， Dr. 何塞Nativi-Nicolau他是一名心脏病专家，也是该中心的主任 淀粉样变的程序 at University of Utah Health and Huntsman Cancer Institute. Dr. Nativit-Nicolau recommended a heart biopsy to test for a rare but very serious heart condition called 淀粉样变.
Ray的诊断是野生型ATTR淀粉样变. His body produces excess protein chains called amyloid fibrils that cannot be absorbed or eliminated naturally. These fibrils were accumulating in his heart, causing the heart walls to thicken. 淀粉样变性无法治愈, and in 2017 there was no way to slow or stop the disease progression. 没有一个 心脏移植手术这种情况将危及生命.
"This disease is rare and can affect how long you're going to live if it's not treated," Dr. Nativi说. “在大发娱乐诊断他的时候, 没有药物被批准用于治疗它, 因此，这对奥巴马来说是一个毁灭性的局面. 格罗斯和他的家人. He was physically active all his life, and now he was facing a deadly condition."
70岁时，雷比一般人都老 心脏移植手术 病人. 但博士. Nativi开始与 Dr. 克雷格Selzman他是 心胸外科 在U of U医院，讨论这种可能性. This treatment isn't common for 淀粉样变 病人s because most are very sick by the time they get diagnosed. 而且他们的预后，即使有一个新的心脏，也不太好.
"Historically, someone over 65 wouldn't get a transplant," Dr. Selzman说. "With Ray, you got the sense that he was someone who has fought his entire life. He was one of those guys that seems younger than his actual age, 他的活动水平, 以及他对生活的总体态度."
"When a physician asks to evaluate a 病人 for advanced therapy, 他们要经过一系列的财务面试, 营养, 社会工作, 心理学, 药店, 然后大发娱乐做了很多测试,莎伦·乌戈利尼说, 护士兼移植协调员. The information is presented to a multidisciplinary team that includes surgeons and cardiologists, who evaluate whether the 病人 meets the criteria for transplant. 如果有，它们就会被放入 器官共享联合网络数据库, which lists every donor that comes through and every recipient waiting.
The team approved Ray's transplant, but his physical health was deteriorating. So doctors checked him into the intensive care unit (ICU) while he waited for a donor heart. He was fast-tracked because his disease was serious and there were no therapies or procedures to mitigate it.
Five weeks later, a young man in Ogden who was an organ donor—and a match for Ray—passed away. 等待心脏捐献者的过程可能会让人感到极其缓慢, 但一旦心脏可用, 速度大大加快. The new heart was on its way and, within a few hours, was in surgery. Dr. 塞尔兹曼在凌晨1点左右开始了手术.m. and worked through the night to transplant Ray's new heart.
Doctors kept him in the hospital for eight days before sending him home—a total of about six weeks in the hospital since he first checked into ICU)—but planned to keep a close eye on him for signs of rejection.
"The risk of transplant for him was low overall, but there is always a risk of rejection," Dr. Selzman说. "There's a constant ying-yang of your body trying to fight off a foreign object versus trying to find some kind of symbiotic harmony to live with this thing that came from the outside."
When Ray first heard he was getting a new heart in December, 他认为他能在二月份参加比赛. 然而，现实却大不相同. Within 10 minutes of arriving home after his first hospital discharge, he got a call to come back after a biopsy showed signs of rejection. 几天后，医生发现他的肺部出血. The medication prescribed to prevent rejection also suppressed his immune system; a month later, 雷得了流感和肺炎. 但他的整个护理团队一直在那里大发娱乐他.
"When you're at [University of Utah Health], you're in phenomenal hands," he said. “我对这种协调一致的护理印象深刻."
Ray has regular follow-up appointments to monitor for rejection and check on his 淀粉样变. 得到一个 心脏移植手术 did not cure the disease—it only removed the damaged heart. Fortunately, new medications are available that can slow or stop amyloid fibril production. So far, there is no evidence of build-up in his new heart.
Ray also had a chance to connect with the parents of his heart donor, a decision both the donor family and the recipient get to make. 他们交换了信件, 在电话里交谈, and eventually met in person to visit the donor's gravesite.
"It's tough talking to a parent who just lost a son," Ray said. "I'm so thrilled because I'm living—and they're devastated.“他和他们保持联系, 发送越野滑雪比赛的照片, 骑自行车, and other activities that he—and the donor—are accomplishing together.
Ray is focused on making the most of life with his new heart. 他说：“淀粉样变性是个麻烦. “这是一种难以置信的疾病——如此复杂的事情. 每一天, 我只是越来越好了, 做一些能让它更强壮、更健康的事情. Some days are diamonds, some are stones—but you keep working at it."