Personal Perspectives Panel: Life After Aortic Surgery
19:07-21:41
Now there's another part of the mental part and Lauren and I were talking about it on the phone yesterday because you still have to watch the rest of your aorta and be monitored and so just because you had one you're not, it's not necessarily one-and-done, I mean, you hope so, but you're still being monitored.
では、その他のメンタル的な不安について話を伺いたいと思います。昨日Laurenと電話で話したことですが、大動脈の手術は一回で済むとは限らないので、その後も経過観察が必要となりますね。
So I don't know, let's start with Lauren. Do you want to talk about like ongoing monitoring and how do you people in general, you know, who have one of these conditions, it's stressful to go have your, you know, your echo because you're just praying that everything's okay. So what's that like after you've especially after you've had a surgery?
まずLaurenから始めたいと思います。大動脈疾患がある場合には、定期的にエコー検査などを受けなければなりません。何事も起きていないことを祈るわけですが、これは大きなストレスになると思います。そうした不安について教えて下さい。
Yeah, it's hard. There's definitely scanxiety. It's what my therapist calls it or she's like, it's normal to feel anxiety around your scans.
そうですね。かなり不安になりますね。私の治療担当者は「scanxiety（画像検査の結果が出るまでの不安な心理状態）」と呼んでいますけどね。検査前後に不安を感じるのは自然なことだと言われました。
And actually this week found out that I'll need another surgery in 2021 so this is just as much for me as getting, you know, like hearing, "Oh, what's the difference between preparing for surgery versus an emergency surgery."
実は今週、今年中に手術が必要なことがわかって。だから、私にとってこの座談会はすごく重要なんです。待機手術と緊急手術の違いを聞ける、って思いましたから。
But it definitely, I mean, it's almost like you're waiting to like, someone's waiting to give you permission of like, "Okay, are you good for another year?" are you like, "Okay so you're kind of not sure what's going to happen and you're kind of waiting and seeing," but then it's also, I mean, you kind of that was a big shift for me, was, I mean, I was "invincible" before I had my surgery and then afterward I'm like, "Wait! So this could happen again? Okay so now we're monitoring it." That, you know, so it's just a little bit of a reminder of your mortality that makes sense of like "Oh okay," but at least from my perspective I'm like, "Well, at least a planned surgery is way better than an emergency."
でも、検査結果を待っている時というのは、誰かの許可を待っているような状態なんですよね。「あと一年は手術しなくてもよさそうです」とか「結果がはっきりとしませんので、経過観察しましょう」といった感じですね。でもこれって私にとってはすごく大きな変化なんです。だって、緊急手術の前は、自分は「無敵」だと思ってたんですけど、それ以降は「またあんな大変なことにならないように定期検査を受けてるんだ」って思うようになりました。何というか、命には限りがあるってことを確認できたというか、少なくとも、「待機手術の方が緊急手術よりもかなりマシなんだ」だということはわかりました。
Dominga, how do you deal with that, scanxiety?
Domingaはscanxietyについてはどう思う？
I love that term. I'm using that from now on. I think now, I, of course, I still have that scanxiety. That's not, there's no way to get rid of that but I will say I think having a stronger support system now because before it was, I didn't want to burden anybody whereas now I work, I work with some of the most amazing people who will make it their business even no matter what the scenario so I have such a great support system that I feel that if I get to a point where I just need to talk about it I know I have people that I can go to. And and that's that's where I've really gotten some solace. It's just knowing that I have people in my corner.
scanxiety...いい言葉ですね。これから使わせていただきます。もちろん、scanxietyはあります。その不安を消し去る方法はないと思います。でも私を強力にサポートしてくれるコミュニティーがあります。以前は誰にも負担をかけたくないって思ってましたけど、今はどんな状況に置かれても、喜んで助けてくれる素晴らしい人達がいます。不安があれば、その人達に相談します。コミュニティーは心から安心できる場所なんです。私にはそういう味方がいるってことがわかっているだけで十分です。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
