Clare Dowling: Rebuilding a Life After Surgery

道林现在住在旧金山. 她的公寓, 她说, 仅仅是一次“跳跃”, 从加州大学旧金山分校, where she returns every six weeks to receive intravenous immune globulin (IVIg) treatment. "I'm hoping that goes away with time," 她说. “但是我认为, 在这一点上, 它是2019, 我已经移植了九年了, 这是意料之中的事. 所以这只是个小代价."

How did you feel when you heard you were experiencing some side effects from the transplant?

There are a lot of factors that drive me to take the best care of myself possible, 其中一个, 当然, 活得久吗, 完整的生活，感谢我的捐赠者. Rejection is one of those things that really terrifies me because it's something that causes transplant recipients to die eventually. So I get a bit of anxiety anytime there's any inkling of that being said or thrown around. I had a lot of difficulty going into transplant and out of transplant, 但我想自从我移植后, 我的一切都很顺利. 我对(被拒绝)并不感到兴奋, 但你能从容面对, 就这样了, 这没什么大不了的. 世事无常，我正在处理.

Has it been difficult to balance living a full life as a young person while still having to plan around your health?

绝对. 我感谢上天赐予我的礼物, 如果没有移植, 我就不会在这里了, so I'm really happy to be alive and with my family and friends. 但我刚做完移植手术的时候, 我和我的父母在家里, 我只是想找回我的生活. 我不得不重新学习走路, 我在轮椅上坐了很长时间, so there were some huge hurdles to get over initially. And now 在这一点上, I would say I think I'm used to what my new normal is.

I think that's one of the things that has kind of hit me hard in the last couple years, realizing that I have to work a full-time job and if I don't work full time, 我没有保险, 所有这些都非常昂贵, 同时, you're trying your best just to stay healthy and work out. 只是有很多东西需要平衡, 同时, you're trying to grow in your career and also do things on your bucket list, because I've been given this second chance at life, [and] I don't want to just live my life doing the grind, 你知道?

I've gone to the ragged edge, and now I want to travel, I want to do all of these things. 但同时, the reality of day-to-day life hits you and you're like, “嗯, I do have to work because I need health insurance, and I do have to kind of maintain my health as best as possible,以及所有这些事情, 这需要大量的工作. 照顾好自己的身体本身就是一项工作.

Balancing those – work life, personal life and my health – it's a lot. I'm doing my best to navigate through that, and my best is all I can do. I think I do a pretty good job, but I think it's always something that I'm working on.

How has the UCSF team supported you over the years?

I honestly don't know where I'd be without UCSF. The IVIg group that helps me there has been amazing, and everyone's really nice. The transplant team – I'm in constant communication with them. I feel like I chat with them like every couple of weeks. 我有时候很健忘, so sometimes I call them multiple times about the same thing, 他们回我电话说, “是的,“再回答我的问题. 我不知道没有他们我该怎么办. The whole UCSF team has been so integral to maintaining my health and my quality of life.

During your recovery, what are some coping mechanisms that you've turned to?

Initially, it was hard to escape the reality of my circumstances. 当我坐在轮椅上的时候, or on these braces and crutches for a while that helped me walk, I really felt like my life had completely done a one-eighty.

对我来说, 我总得想办法往前走, so I went back to school and I started doing things that I loved, 喜欢骑马. Or spending time with friends, talking with them about things that weren't my health. 这对我来说才是最重要的. So much of my life for more than a year was just about what my blood pressure was, what my oxygen stats were; so focusing on something aside from my health and my future and my goals was important.

现在我工作, and I'm always looking ahead: What is my next vacation going to be, how can I work towards going on a trip with my family or friends, or how can I work towards improving in my work or developing a new hobby? [I'm] doing things that aren't all focused on my health – which is what I think everyone's goal is at UCSF, 过你自己的生活, and I think this helped me move from just being the patient. 这就像, OK, 现在我习惯了吃药, 我已经习惯了这种苦差事, 在周日晚上, 列出我这周的药物, and now I'm getting my blood work [regularly].... It becomes less of a big deal after a while, 你可以想想, 好吧, 接下来我要做什么, 现在我有了新生活?

你在期待什么?

再一次, transplant has given me such a new lease on life that things I really care about are spending time with my family, being the maid of honor in my sister's wedding this year, 还有我朋友的婚礼, 看看这个利来登录. That's really important to me: experiencing different cultures, 学习新事物, 和我爱的人在一起. 这正是我所期待的, I think: always becoming a better version of me, 一个更快乐的我. 过着最好的生活. 这才是我真正关心的. 和我最喜欢的人一起吃美味的食物. 不求太多.