为什么这个项目如此重要?
肺间质性疾病是一种复杂的疾病. 这是相对罕见的. 我们并不总是知道该怎么做.
ILD programs have traditionally been academic, focused around research. 我们非常关注研究, but we now recognize the need to also make sure we are delivering top-quality care.
Since ILD can be hard to diagnose, it must be a relief for patients to finally get a diagnosis.
我们提供的关键服务之一是全面的诊断方法. 有很多不同的疾病我们必须加以区分, and that’s complex and requires input from people – radiologists looking at X-rays or pathologists looking at tissue samples under the microscope. 整合所有这些并不容易. 它需要大量的时间和将人们团结在一起的能力.
像UCSF这样的学术中心提供了这种能力. Figuring out why patients have this condition not only directs their therapy and expectations, but it’s also inherently helpful and reassuring to people to know what’s happening, 即使消息不太好.
Many ILD patients aren't able to breathe easily, something most of us take for granted. What's it like to go through life not being able to breathe well and not knowing why?
我不可能知道, 只是观察它们, I think it’s terrifying to not be able to catch your breath and not understand why. 这在生理上和心理上都很不舒服. 病人们每时每刻都要面对这些, 所以不知道能做些什么真的是, 真的很难.
你如何保持团队的积极性?
病人非常有韧性和勇敢, and interacting with them in the clinic is really all the motivation most of us need.
你从你的病人身上学到了什么?
One of the biggest things is the remarkable strength of individuals who are suffering from not just physical disease but also fear of the unknown. 你看到了力量，也看到了痛苦. Your natural inclination is to gain motivation from that and push to relieve the suffering.
I was at a conference a couple of years ago where we were talking about progress in lung fibrosis and we said, “如果你回顾过去10年, 我们已经取得了重要进展. 我们还没有解药，但我们应该感觉很好.观众中的一位病人站起来说, “恕我直言, there is an urgency here that means I don’t want you to be comfortable with this progress.”
我一直记得. Not to belittle the progress we’ve made, but there is a real pressure to keep moving. 我认为这就是加州大学旧金山分校试图通过这个项目做的事情.
加州大学旧金山分校, some patients with incurable forms of ILD have the option of taking part in research trials for new treatments. 为什么这类研究如此重要? 它能为病人提供什么?
我认为研究是一种临床工具. 研究显然对更大的社区有益, 但我也认为对个别病人来说, 十大赌博靠谱网络平台研究对他们的生活是一种积极的力量. They feel like they are gaining some measure of control back that their disease has taken from them.
They are doing something proactive, even if it’s not clear if it’s going to benefit them directly.
那种耐心的奉献精神令人印象深刻.
I try to help patients understand that without their investment and active involvement in research, 我们哪儿也去不了.
其中一些情况我们有治疗方法, 但是他们中的很多人, 即使有治疗, 继续恶化. 除非病人愿意十大赌博靠谱网络平台, we are never going to advance medical knowledge and find treatments and eventually cures.
ILD项目给人一种希望. 你为什么兴奋?
我对未来非常乐观. 我认为这不会很快或很容易, but if you look at the last 20 years and the progress we’ve made in understanding disease and delivering care, 这种趋势是正确的, 我看不出有什么理由要改变. I hope it will accelerate as we can harness new approaches to understanding the biology of disease and apply that clinically. 对我来说, that’s the real frontier in ILD research: using technology to understand individual biology and then aligning therapies with the disease process active in an individual.
加州大学旧金山分校是如何让你实现这些目标的?
加州大学旧金山分校致力于发现和学术自由. 这就是你需要从一个机构得到的, and they provide a tremendous amount of support and infrastructure that helps us take those ideas and implement them. 这里的人们分享着这种文化. I feel very lucky to be here, to have the opportunity to do these things. 大学帮助并分享整体愿景.
在大学十大赌博平台排行榜工作对这个项目有什么影响?
The real strength of a university hospital is the trainees and mentees we work with, 因为它带来了源源不断的年轻人, 动机, 看问题的角度和我不一样的聪明人.
It’s only by looking at things through a new lens that you have those ideas that maybe don’t fit into the typical paradigm, 但最终可以改变一些事情, 我已经多次看到这种情况.
对病人护理的关注如何帮助病人的康复过程? 这对项目有什么帮助?
A really important quality of our program is that we have the time to listen. The reality of medical care is that patients have a very short period of time to spend with the physician. 这对所有相关人员来说都是非常令人沮丧的, and one of the results is that most doctors really don’t have time to listen in depth to the issues, particularly with complex life-threatening medical conditions like interstitial lung disease.
Having an hour with a new patient to really listen to what they are experiencing or needing from me is both helpful for their care and motivating for taking those needs and looking at them from a research perspective – trying to figure out ways to relieve those needs, 不仅对他们，对更大的患者群体也是如此.
It's interesting that so much comes from just having the time to talk to patients.
时间是如此重要. 我的感觉是它在很多医疗保健中正在消失. I’m lucky that UCSF supports us having that amount of time to really focus on patients.
这是一种承诺, too: to enter into a long-term relationship with these patients.
这是一种承诺. 这不是一个一次性解决的问题. These are long-term diseases that require attention and follow-up and reassessment, 有时是为了生活.
能有这份工作，我感到很幸运. 和别人一起工作的机会, 在可能的情况下直接在诊所帮助他们, 创造性地思考如何推动医学向前发展, working with a great group of people – and supporting them so that they have the opportunity to do that – is a privilege. 我对我们的现状很满意, 但我有一种保持成长的紧迫感, 多做，多进步.
