克莱尔·道林:手术后重建生活

Now Dowling lives in San Francisco. Her apartment, she says, is just a "hop, skip and a jump" from UCSF, 她每六周回来接受静脉注射免疫球蛋白(IVIg)治疗. 她说:“我希望这种情况会随着时间的推移而消失。. "But I think, at this point, it's 2019, I'm nine years out of transplant, this is kind of par for the course. So it's a small price to pay."

当你听说移植会产生一些副作用时，你有什么感觉?

有很多因素驱使我尽可能地照顾好自己, and one of them, of course, is living a long, full life and honoring my donor. 排异反应是让我非常害怕的事情之一，因为它最终会导致移植接受者死亡. 所以每当有人说这话或说出来的时候，我就会有点焦虑. 我在移植手术和移植手术中都遇到了很多困难, but I think since my transplant, I've had things go really well. I wasn't excited about [the rejection], but you take things in stride, and here we are, and it's not too much of a big deal. Things happen, and I'm dealing with it.

作为一个年轻人，是否很难平衡过着充实的生活，同时又要为自己的健康做计划?

Absolutely. I'm thankful for the gift I've been given, and without my transplant, I wouldn't be here, 所以我真的很高兴能活着，和我的家人和朋友在一起. But when I first got out of transplant, I was at home with my parents, just trying to get my life back. I had to relearn how to walk, I was in a wheelchair for a long time, 所以一开始有一些巨大的障碍需要克服. 现在，我想说我已经习惯了我的新常态.

我想这是在过去几年里给我最大打击的事情之一, 意识到我必须有一份全职工作，如果我不全职工作, I don't get insurance, and all of that is very expensive, and at the same time, 你在尽最大努力保持健康，锻炼身体. There's just a lot to balance, and at the same time, 你想在事业上有所成长，同时也在完成遗愿清单上的事情, 因为我得到了第二次生命, 我不想只是埋头苦干, you know?

我已经走到了崎岖的边缘，现在我想去旅行，我想做所有这些事情. But at the same time, 日常生活的现实打击了你，你就像, "Well, 我必须工作，因为我需要医疗保险, 我必须尽可能保持我的健康," and all those things, it's a lot of work. Taking care of my body is a job in itself.

平衡工作生活、个人生活和我的健康是很困难的. 我正在尽我最大的努力渡过难关，尽我最大的努力. 我认为我做得很好，但我认为这是我一直在努力的事情.

这些年来加州大学旧金山分校是如何支持你的?

老实说，如果没有加州大学旧金山分校，我真不知道我会在哪里. 帮助我的IVIg小组非常棒，每个人都很好. 移植团队，我一直在和他们沟通. 我觉得我每隔几周就会和他们聊天. I can be forgetful sometimes, 所以有时候我就同一件事给他们打好几次电话, and they return my calls and say, "Yep," and answer my question again. I don't know what I'd do without them. 整个加州大学旧金山分校的团队对维持我的健康和生活质量是不可或缺的.

在你恢复的过程中，你采用了哪些应对机制?

一开始，我很难逃避现实. When I was in a wheelchair, 或者用这些支架和拐杖来帮助我走路, 我真的觉得我的生活完全改变了180度.

For me, I have to move forward in some way, 所以我回到学校，开始做我喜欢的事情, like riding horses. 或者花时间和朋友在一起，和他们谈论一些与我的健康无关的事情. That's what was really important for me. 在一年多的时间里，我生活中的大部分时间都与血压有关, what my oxygen stats were; so focusing on something aside from my health and my future and my goals was important.

Now I'm working, 我总是向前看:我的下一个假期是什么, 我怎样才能和家人或朋友一起去旅行呢, 或者我怎样才能提高我的工作或者培养一个新的爱好? (我)做的事情与我的健康无关——我认为这是加州大学旧金山分校每个人的目标, [to] live your life, 我认为这让我不再只是一个病人. It's like, OK, now I'm used to taking my medications, I'm used to the grind of, on Sunday night, setting out my medications for the week, 现在我正在定期做血液检查.... It becomes less of a big deal after a while, and you can think about, Well, what am I going to do next, now that I have this new life?

What are you looking forward to?

Again, 移植手术让我重获新生，我真正关心的是与家人共度时光, 今年在我姐姐的婚礼上做伴娘, and my friend's wedding, and seeing the world. 体验不同的文化对我来说非常重要, learning new things, just being with the people I love. That's what I'm looking forward to, 我想:永远成为更好的自己, a happier version of me. Just living my best life. That's really all I care about. Eating great food, with my favorite people. Not asking for much.