Tal Golesworthy: How I repaired my own heart

譯者: Yuning912 陳又寧 審譯者: Paoli Lee

我是一個製程工程師。

I'm a process engineer, I know all about boilers and incinerators

我知道關於鍋爐和焚化爐的一切，

and fabric filters, and cyclones, and things like that.

包括像織物過濾器和旋風分離器一樣的東西。

但我也患有馬凡氏症候群。

But I also have Marfan syndrome.

它是一個遺傳性疾病。

This is an inherited disorder.

And in 1992, I participated in a genetic study,

在1992年，

我參加了一項基因研究，

and found to my horror, as you can see from the slide,

我驚恐的發現，如同你從投影片上所看到的，

that my ascending aorta was not in the normal range,

我的升主動脈不在底下那條綠線標示出的

正常範圍之內。

the green line at the bottom.

在座的每位的升主動脈都會在 3.2 到 3.6 公分之內，

Everyone in here will be between 3.2-3.6,

而我的是 4.4.

and I was already up at 4.4.

And as you can see, my aorta dilated progressively,

如你所見，

我的主動脈不斷的擴大，

and I got closer and closer to the point where surgery was going to be necessary.

而我也離需要手術的階段

越來越近。

The surgery on offer was pretty gruesome.

這項手術有些可怕 -

麻醉你後將你的胸腔打開，

Anesthetize you, open your chest,

put you on an artificial heart and lung machine,

將你接上人工心肺儀器，

drop your body temperature to about 18 centigrade,

將你的身體溫度降到大約攝氏18度左右，

stop your heart, cut the aorta out,

停止你的心臟跳動，切除大動脈，

replace it with a plastic valve and a plastic aorta.

替換上人工瓣膜和人工大動脈，

最後，最重要的，

And most importantly, commit you to a lifetime of anticoagulation therapy.

你將一輩子需要使用華法令阻凝劑的

抗凝療法。

Normally, warfarin.

手術這件事情聽起來不是很吸引人，

The thought of the surgery was not attractive.

The thought of the warfarin was really quite frightening.

而需要使用華法令阻凝劑的這個想法

讓我感到非常害怕。

所以我告訴自己，我是一名搞研究開發的工程師，

So I said to myself,

"I'm an engineer, I'm in R&D, this is just a plumbing problem."

這只是一個像水管的問題，

我可以自己搞定，我可以改變它。

"I can do this, I can change this."

於是我開始嘗試

So I set out to change the entire treatment for aortic dilation.

改變對於動脈擴張的

全部療程。

The project aim is really quite simple.

我的目標非常簡單。

The only real problem with the ascending aorta

有著馬凡氏癥候群的人的升大動脈的

in people with Marfan syndrome

唯一真正地問題

is that it lacks some tensile strength.

就是它缺乏張力。

所以有一個可能便是

So, the possibility exists to simply externally wrap the pipe,

將血管從外面包住，

and it would remain stable and operate quite happily.

它便可以保持穩定並正常的運作。

如果你的高壓水管，

If your high-pressure hose pipe or hydraulic line bulges a little,

或你的高壓液壓管路有一點點的膨脹，

你只需要用一些膠帶纏繞住它的外面。

you just wrap some tape around it, it really is that simple.

這個原理非常簡單，

In concept, though not in execution.

但在執行上卻恰恰相反。

The great advantage of an external support, for me,

這種外部的支撐對我有一個很大的好處，

was that I could retain all of my own bits,

那就是我可以保持我自己身體的部份，

all of my own endothelium and valves,

我自己所有的內皮和瓣膜，

and not need any anticoagulation therapy.

以及不需要任何的抗凝療法。

那我們從哪裡開始呢？

So, where do we start?

這是我的一個矢狀切片，

This is a sagittal slice through me.

你可以看到在中間

In the middle, you can see that little structure squeezing out,

有個很小的結構在往外擠壓。

that's the left ventricle,

那是左心室

pushing blood out through the aortic valve.

在通過主動脈辦 -

你可以看到主動脈瓣的兩個瓣膜在工作 -

You can see two of the leaflets of the aortic valve working there.

Up into the ascending aorta.

往升大動脈中壓血。

And it's that part, the ascending aorta,

而升大動脈的

擴大和最終的破裂

which dilates and ultimately bursts, which of course is fatal.

終將致命。

We started by organizing image acquisition

我們從排列核磁共振

from magnetic resonance and CT imaging machines,

和電腦斷層掃描

得到的照片開始，

from which to make a model of the patient's aorta.

來為患者的大動脈

建造一個模型。

這是我的大動脈的模型。

This is a model of my aorta.

I've got a real one in my pocket,

我的口袋裏面有一個真的模型，

if anyone would like to look at it, and play with it.

如果有人想看並把玩一下。

(Laughter)

You can see it's quite a complex structure.

你可以看到，它的構造有些複雜。

It has a funny tri-lobal shape at the bottom,

它下方一個奇怪的三葉形的形狀

which contains the aortic valve.

包括了主動脈瓣。

It then comes back into a round form,

接著它慢慢變成了圓形，

and then tapers and curves off.

並逐漸變細。

所以的確是個滿難建造的

It's quite a difficult structure to produce.

一個架構

這個，就像我說的，是我的電腦輔助設計出來的模型，

This is a sort of CAD model of me,

and this is one of the later CAD models.

而這個是最新的模型之一。

We went through an iterative process of producing better and better models.

爲了建造更好的模型，

我們經歷了很多反複的步驟。

當我們建造這個模型的時候，

When we produced that model,

we turned it into a solid, plastic model, as you can see,

正如你所見，

我們利用快速成型技術，

using a rapid prototyping technique, another engineering technique.

一種工程技術，

把它變成了一個實體塑料模型。

We then used that former

我們接著用先前的模型

to manufacture a perfectly bespoke porous textile mesh,

來生產一個完全預製的

以之前的模型為形狀

which takes the shape of the former and perfectly fits the aorta.

完全適合大動脈的

多孔紡織網。

So this is absolutely personalized medicine at its best, really.

所以這是完完全全的

最好的個體化醫療。

我們的每一個病患

Every patient we do has an absolutely bespoke implant.

都有一個完全為他們訂製的植入物。

Once you've made it, the installation is quite easy.

當你建造了它后，裝上它還算簡單。

John Pepper, bless his heart, professor of cardiothoracic surgery.

John Pepper，上帝保佑他，

他是一位心胸外科的教授 -

在他的生涯中，之前從未做過這個手術。

Never done it before in his life, he put the first one in, didn't like it,

他將第一個放進去后，覺得不怎麼好，拿了出來，又放了第二個進去。

he put the second one in.

然後我開心的離開了。

Happy, away I went.

躺在手術臺上四個半小時，然後一切都搞定了。

Four and a half hours on the table, and everything was done.

所以手術植入其實是最簡單的部份。

So the surgical implantation was actually the easiest part.

如果你將我們的新療法和現有的

If you compare our new treatment to the existing alternative,

所謂的複合主動脈根部移植物來做比較，

the composite aortic root graft,

there are one or two startling comparisons

有兩個讓人吃驚的發現。

which I'm sure will be clear to all of you.

我待會會很清楚的展現在各位面前。

Two hours to install one of our devices,

裝我們的裝置需要花兩個小時，

而現有的治療卻需要

compared to 6 hours for the existing treatment.

六個小時。

現有的治療，就像我所提到的，

As I said, the existing treatment requires the heart-lung bypass machine,

需要人工心肺儀器，

and it requires a total body cooling.

並需要完全的冷卻人體。

We don't need any of that. We work on a beating heart.

我們都不需要上面說的那些； 我們是在一個跳動的心臟上做手術。

He opens you up,

醫生將你的胸腔打開，在對的溫度下，和你的心臟持續跳動之時

he accesses the aorta while your heart is beating,

揀出大動脈。

all at the right temperature.

No breaking into your circulatory system.

你的血液循環系統也不需要被打斷。

So it really is great.

所以它真的很好。

But for me, absolutely the best point is,

但對我來說，最好的一點

there is no anticoagulation therapy required.

是不需要任何的抗凝療法。

I don't take any drugs at all,

除了我選擇吃的養生藥物之外，

other than recreational ones that I would choose to take.

我不需要吃任何的藥。

（笑聲）

(Laughter)

And in fact, if you speak to people who are on long-term warfarin,

事實上，如果你和長期使用華法令抗凝療法的人交談，

it is a serious compromise to your quality of life,

你會發現華法令對生活的品質有著嚴重的損害。

and even worse, it inevitably foreshortens your life.

更糟的是，

它不可避免的會縮短你的生命。

同樣的，如果你選擇了人造瓣膜，

Likewise, if you have the artificial valve option,

you're committed to antibiotic therapy

當你有任何的侵犯性的治療時，

whenever you have any intrusive medical treatment,

你都需要使用抗生素療程。

even trips to the dentist require that you take antibiotics,

連去牙醫那你都需要吃抗生素

in case you get an internal infection on the valve.

來預防任何瓣膜的內部感染。

Again, I don't have any of that, so I'm entirely free,

而我，完全不需要這些，所以我是完全自由的。

my artery is fixed.

我的大動脈被治好了，我不需要擔心它，

I haven't got to worry about it, which is a rebirth for me.

這對我來說是一個重生。

重新回到我演講的主題：

Back to the theme of the presentation, multidisciplinary research,

在跨越多個領域的研究中，

how on earth does a process engineer used to working with boilers

一個習慣和鍋爐工作的製程工程師

end up producing a medical device which transforms his own life?

是如何建造一個完全改變他自己生命的

醫療儀器？

Well, the answer to that is, a multidisciplinary team.

一個跨領域的團隊是這個問題的答案。

This is a list of the core team,

這是中心團隊的人員列表。

and you can see there aren't only two principal technical disciplines there,

就像你所看到的，

它不僅僅包括了兩個大的領域，

medicine and engineering,

醫學和工程學，

but also, there are various specialists from within those two disciplines.

也包括了這兩種領域中的

各種專業人員。

John Pepper was the cardiac surgeon who did all the actual work on me.

John Pepper 是

為我動手術的那位心臟外科醫生。

But everyone else had to contribute one way or another.

但名單中的每一位都做出了一定的貢獻。

Raad Mohiaddin, a medical radiologist.

Raad Mohiaddin 是醫療放射專家：

We had to get good-quality images from which to make the CAD model.

我們需要高質量的圖像

來建造電腦輔助冠狀動脈模型。

Warren Thornton, who still does all our CAD models for us,

Warren Thornton 仍然在為我們建造所有的模型。

had to write a bespoke piece of CAD code

他需要為每一個預訂的模型

to produce this model from this really rather difficult input data set.

從一個相當困難的數據輸入資料中

寫一個特殊的電腦輔助模型編碼。

There are some barriers to this, though, there are some problems.

但這仍然有些障礙以及問題。

行業術語是很大的一個。

Jargon is a big one.

I would think no one in this room understands the first four jargon points.

我認為在座的每一位應該都不知道

前面這四個行業術語。

The engineers amongst you will recognize "rapid prototyping" and "CAD."

在座的工程師們

可以認出快速成型和電腦輔助設計。

The medics amongst you, if there are any, will recognize the first two,

在座的醫療行業的，如果有的話，可以認出前兩個。

but there will be nobody else here that understands all those four words.

但在座的沒有人

可以明白全部的四個詞。

Taking the jargon out was very important

將行業術語剔除

to ensure that everyone in the team understood exactly what was meant

對確保團隊中的每個人

在一個詞被使用時

when a particular phrase was used.

能夠明白它的意思，非常的重要。

各個行業習慣的不同也非常有趣。

Our disciplinary conventions were funny as well.

We took a lot of horizontal slice images through me,

透過我，我們得到了很多橫切圖像，

produced those slices and used them to build a CAD model.

製造這些切片圖像並用他們來建造電腦輔助設計模型。

And the very first CAD model we made,

我們建造的第一個模型，

the surgeons were playing with it and couldn't quite figure it out.

外科醫生在把玩了這個塑料模型後

不太能夠完全理解。

And then we realized that it was actually a mirror image of the real aorta.

然後我們意識到它是真的大動脈的

翻版。

And it was a mirror image because in the real world,

它是一個鏡像圖像

因為在現實中我們總是從上面的角度往下看，

we always look down on plans,

plans of houses, or streets, or maps.

房子或者是街道的規劃圖或地圖。

In the medical world, they look up at plans.

在醫學的世界中，他們是由下往上看規劃圖，

So the horizontal images were all in inversion.

所以橫切圖像是完全相反的。

So, one needs to be careful with disciplinary conventions.

所以我們也要注意行業的習慣。

Everyone needs to understand what is assumed and what is not.

每個人都需要明白

什麽是假設的，什麽是沒有被假設的。

制度性障礙

Institutional barriers were another serious headache in the project.

是項目中另一個讓人頭痛的問題。

The Brompton Hospital was taken over

布朗普頓醫院在被

by the Imperial College School of Medicine.

帝國學院的醫學院接管後，

And there are some seriously bad relationship problems

兩個機構之間存在著

非常嚴重的問題。

between the two organizations.

I was working with the Imperial and the Brompton,

我在和帝國和布朗普頓合作的時候，

因為兩者之間的問題使得我們的計畫產生了一些嚴重的問題，

and this generated some serious problems for the project.

Really, problems that shouldn't exist.

一些其實根本就不應該存在的問題。

Research & Ethics Committee.

研究和倫理委員會： 如果你想在手術中做些新的嘗試，

If you want to do anything new in surgery,

你必須先從當地的研究和倫理委員會處獲得許可證。

you have to get a license from your local Research & Ethics.

我確定波蘭也是這樣的。

I'm sure it's the same in Poland.

那將會有一些類似的程序

There will be some form of equivalent which licenses new types of surgery.

來許可新的類型的手術。

We didn't only have the bureaucratic problems associated with that,

我們不僅僅有著和這有關的官僚問題，

we also had professional jealousies.

我們還遭到了一些同行的嫉妒。

There were people on the Research & Ethics committee

有些在研究和倫理委員會的人

並不希望 John Pepper 再次成功，

who really didn't want to see John Pepper succeed again.

因為他已經是如此的有成就。

Because he is so successful.

And they made extra problems for us.

所以他們對我們造成了很多多餘的問題，

Bureaucratic problems.

官僚問題：

Ultimately, when you have a new treatment,

當你有一個新的療程的時候，

you have to have a guidance note for all the hospitals in the country.

最終你必須給國內的每個醫院寄出一個

指導說明。

In the UK, we have the National Institute and Clinical Excellence.

在英國，我們有國家衛生醫療質量標準署，簡稱NICE。

你們在波蘭毫無疑問的也有類似的機構。

You have an equivalent in Poland, no doubt.

我們必須通過NICE這一關。

And we had to get past the NICE problem.

我們現在在網路上有一個很好的臨床指導書。

We now have a great clinical guidance, out on the net.

所以每個有興趣的醫院

So any other hospitals interested can come along, read the NICE report,

都可以上網讀這份報告，

get in touch with us, and then get doing it themselves.

和我們聯繫，然後自己可以開始進行這項手術。

資金障礙：

Funding barriers, another big area to be concerned with.

資金來源是另一個需要考量的大問題。

另一個個跟理解這個願景的情況的大問題是

A big problem with understanding one of those perspectives.

當我們第一次跟英國提供這種資金援助的

When we first approached one of the big, charitable UK organizations

大的慈善機構之一接洽的時候，

that fund this kind of stuff,

從他們的角度看，根本是一個工程提案。

we essentially gave them an engineering proposal.

They didn't understand it, they were doctors, next to God,

他們看不懂； 因為他們是醫生，他們僅次於上帝。

所以它肯定是垃圾。 於是他們將它扔了。

it must be rubbish, they binned it.

所以最後，我放棄了。

So in the end, I went after private investors, just gave up on it.

我轉而去找私人投資者。

Most R&D is going to be institutionally funded,

但大多數的研究開發資金來源都是來自於

by the Polish Academy of Sciences

波蘭科學學院，

或者是工程物理研究院類似的機構，

or the Engineering and Physical Sciences Research Council, or whatever.

And you need to get past those people.

然後你必須通過這些人的審核。

當你嘗試跨領域工作時，行業術語是 一個大問題。

Jargon is a huge problem when you try to work across disciplines,

因為在工程師的世界裡，

because in an engineering world, we all understand CAD and RP.

我們都懂什麼是CAD和R.P. --

Not in the medical world.

但醫療世界工作者卻不會懂。

我覺得最終，贊助的機構一定要開始有所作為，

I suppose the funding bureaucrats ultimately have to get their act together.

要開始和其他機構溝通，

They've really got to start talking to each other,

並且開始運用一些想像力。

and exercise a bit of imagination, if that's not too much to ask.

如果不是個太過份的要求的話，

(Laughter)

Which it probably is.

但事實上可能是。

(Laughter)

I've coined the phrase "obstructive conservatism."

我創造了一個叫做”妨礙性保守主義“ 的詞。

So many people in the medical world don't want to change.

很多醫療世界中的人不想要改變，

Particularly when some jumped-up engineer has come along with the answer.

特別是當一個工程師突然莫名其妙的跳出來並帶來了答案。

他們不想改變。

They don't want to change.

They simply want to do whatever they've done before.

他們只想做以前一直都在做的。

事實上，很多英國的外科醫生

And in fact, many surgeons in the UK are still waiting

仍然在等著我們病患中的某個人

for one of our patients to have some sort of an episode,

發生一些問題，

so that they could say, "Told you that was no good."

好讓他們可以說： 『你看！我跟你說那個是不好的。』

We've actually got 30 patients.

我們目前有30個病患。

At seven and a half years,

我的手術到現在已經7年半。

we've got 90 post-op patient years between us,

所有的病患手術後加起來的時間有90年，

and we haven't had a single problem.

但我們到目前都沒有任何問題。

And still, there are people in the UK saying,

但還是有英國人在說，

"That external aortic root, it will never work, you know."

『喔，那個外部大動脈支撐喔，它不會有效的。』

It really is a problem.

這真的是個問題，真的是個問題。

我確定在座的每位都在

I'm sure everyone in this room has come across arrogance

醫療界，醫生，外科醫生那裡經歷過傲慢的態度。

amongst medics, doctors, surgeons, at some point.

The middle point is simply the way that the doctors protect themselves.

這僅僅是

醫生們保護他們自己的折衷方法。

"Well, of course, I'm looking after my patient."

『我當然要照顧我的病患。』

I think it's not good, but that's my view.

我覺得這種想法是不好的，但你看。這是我的想法。

Egos, of course, again a huge problem.

自傲，當然，也是 一個很大的問題。

當你在一個跨領域的團隊裏面工作，

If you work in a multidisciplinary team,

你必須相信你的隊友，

you've got to give your guys the benefit of the doubt,

you've got to express support for them.

必須表達對他們的支持。

Tom Treasure, professor of cardiothoracic surgery.

Tom Treasure，一位心胸外科教授，

令人難以置信的一個人。

Incredible guy.

Dead easy to give him respect.

尊重他是件很容易的事情。

Him giving me respect? Slightly different.

他給我尊重？這就有點不同了。

(Laughter)

這些都是不好的消息。

That's all the bad news.

The good news is, the benefits are stonkingly huge.

好消息是它的益處非常的大。

Translate that one! I bet they can't.

翻譯這個。我賭他們不能。

（笑聲）

(Laughter)

When you have a group of people with different professional training,

當你有一群

有不同的專業訓練和經驗的人，

a different professional experience,

they not only have a different knowledge base,

他們不僅僅有著不同的知識基礎，

他們也對每個事物有不同的觀點。

but also a different perspective on everything.

如果你能將這些人都聚在一起

And if you can bring them together,

讓他們開始交流並且互相理解對方，

and get them talking and understanding each other,

the results can be spectacular.

結果將會是非常的好。

You can find really novel solutions that have never been looked at before,

你可以找到新的解決方案，非常新的方案，

甚至是從來沒有被看過的，

very quickly and easily.

非常，非常的快和容易。

You can short-cut huge amounts of work

使用這些延長的知識庫，

simply by using the extended knowledge base you have.

你便可以減少很多的工作量。

結果便是

And as a result, it's an entirely different use

一個使用科技和你周遭的知識

的一個完全不同的方式。

of the technology and the knowledge around you.

這一切的結果便是

The result of all this is that you can get incredibly quick progress

在很小的資金下

on incredibly small budgets.

可以獲得很快的進展。

I'm so embarrassed at how cheap it was to get from my idea

我對從我的想法到接受手術植入變為現實

花了多麼少的錢而感到羞愧，

to me being implanted

所以我並不打算告訴你們花了多少錢。

that I'm not prepared to tell you what it cost,

因為我認為

because I suspect there are absolutely standard surgical treatments,

完全的標準手術療程是存在的，

可能在美國是有的。

probably in the USA,

which cost more for a one-off patient

這樣的情況下

在一個病患上的花費

than the cost of us getting from my dream to my reality.

都比從將我的夢想到變為真實

的花費來得更多。

That's all I want to say, and I've got three minutes left.

以上是我所想說的，而我還有三分鐘的時間。

So, Ewa's going to like me.

所以Heather將會很開心。

If you have any questions, please come up and talk to me later on,

如果你有任何問題，請待會上來跟我聯繫。

it would be a pleasure to speak with you.

這將是我的榮幸。感謝大家。

Many thanks.

(Applause)