Personal Perspectives Panel: Life After Aortic Surgery
40:44-45:01
So, so I don't know if everybody saw but Dominga wrote this great blog post on our blog about top five things that she wish she knew before aortic surgery. I wanted and I'll put, I'll, I keep saying I post some things in this chapter. I'm listening to you guys, haven't done it yet, I will share that blog post again.
皆さんお読みになったかわかりませんが、Domingaが書いた「大動脈手術の前に知っておきたかった5つのこと」というブログがあります。後で皆さんに紹介したいと思います。
But let's go to Peter, was there anything that you wish you knew before surgery that you want to tell people tonight? We have over a hundred people listening.
では、Peterに質問ですが、手術の前に知っておきたかったことで、皆さんに伝えたいことはありますか？現在数百人の方がこの座談会を視聴していますが。
I mean, we've, I think beaten this horse to death I'm fatigued and definitely fatigued if you think, you know, how fatigue you're gonna be you don't, like multiply it by a hundred like I, I remember waking up just being absolutely out of it barely paying attention to the Bruins playing in Stanley Cup on the TV but like, it's like, it, it's definitely something that I wish I had like remembered, are known beforehand because definitely fatigue. It's definitely like that is a big part of your post surgery life.
既に何度も言われていることですが、疲れやすさですね。実際は、皆さんが想像している疲れやすさの100倍くらいです。思い出してみると、目が覚めてなんとかテレビのスポーツ中継を見ていられるといったくらいでした。自分の場合、術後の生活において、疲れやすさが大きな問題でした。
That's great. Victoria, what about you? Anything you wish you knew, I mean, you did have Dominga, so this was good to have a mentor, right?
Victoriaはどうですか？手術前に知っておきたかったことはありますか？Domingaのような手術の先輩がいたおかげで助かったこともあったと思いますが。
Yeah, I think there were, there were two things, especially one of the things that Domingo did say I was having a really bad day. One, one of the days I was getting really sick. I had a really high fever. I was shaking and then, you know, just like Dr. Liang said you have to do your breathing and your walking. Those are two things that I could tell people. You have to use your breath, oh my gosh, I forgot the name of it.
2つあります。1つ目はDomingaも言っていたことですが、本当に体調が悪くてどうしようもない日があるということです。そんな日は高熱が出て、震えていましたね。それから、David先生からもあったように、呼吸トレーニングと散歩です。この2つを皆さんに伝えたいと思います。呼吸トレーニングの時は...あれ？器具の名前をど忘れしました。
Spirometer.
肺活量計じゃない？
Thank you. I don't know how I could forget that my, my mind tried to block it out. If you do your breathing and your walking things will be so much better.
ありがとう。どうして忘れたんだろう。ともかく、呼吸トレーニングと散歩をしていれば、回復が早くなるはずです。
But you have to remember that you will have bad days so I think one of the things that I wish I knew before was that even if you have 10 awesome days in a row where you're like, "Wow, I feel back to normal again," and then the next day you wake up and you feel like you got hit by a bus even if you didn't do anything like too wrong.
でも、調子の良くない日はあります。手術前に知っておきたかったことの一つですが、10日連続で良い日が続いて「やっと元の自分に戻った」と思っていても、次の日には、バスに轢かれたような感覚と共に目覚めるんです。特別に悪いことはしていないんですけどね。
It's, you're still on your recovery journey and you're okay. You're still okay. You just have to push through it and that's something that I really like to tell people is that don't get too down about it, you know, even though I, I did on occasion just remember that you just went through something very traumatic not only mentally but physically and your body is still healing just like your mind is. That was something really bad for me.
まだ回復の途中だということなんですけど、それでいいんです。乗り越えればいいことですから。あまり落ち込まないようしてほしいですね。メンタル的にも、身体的にも大きなトラウマになってしまうような出来事があっても、メンタルと同じように身体も回復していきます。私にとってはすごく大変なことでしたけども。
Great advice. Lauren, how about you, I mean, you, it was not planned so now in retrospect, what are some things that you would tell somebody else who's going through that not emergency but, you know...
素晴らしいアドバイスですね。Laurenの場合は、緊急手術だったわけですが、待機手術を控えている皆さんに伝えたいことはありますか？
I mean echoing what Peter and Victoria said just that it's a journey and yeah, exactly what you said would there be days where I'm like, "I feel great. I'm doing great.” and then I'd like push like, "Oh, I'll just do a little bit of work or I'll just check email or oh," then the next day, I'd feel terrible. I'm like, "What did I do to myself?"
PeterやVictoriaが言ったことの繰り返しになるんですけど、自信に溢れるような日があって、ちょっと仕事をしてみよう、とか、メールをチェックしよう、とか気合が入るんですけど、次の日にはすごく気分が落ち込んで、「私、何をしちゃったのかしら？」ってなるんです。
So you see like this constant battle, especially with young people just like, yeah like, "Okay, I need to be patient with myself and give myself some grace," but also, you know, keep moving forward not just stop where you're at and for me, I mean, the whole experience was brand new and so that's where I was like, "I didn't know what to expect."
こんなのの繰り返しです。特に若い人なんかは「もうこの辺でいいや」ってなると思うんです。でも、ずっとその場所にとどまるわけにはいかなくて、前に進まないといけないんですよ。術後は全ての経験が新鮮で、何が起こるかなんてわからないんですよね。
And so I think the biggest, yeah, what I wish I knew before was just the emotional journey that it would be and just yeah processing all that not feeling like "I'm a burden on other people" or like, like being an independent person and then suddenly being dependent. I think that was a big shock for me.
なので、手術前に一番知っておきたかったことというのは、メンタル面での葛藤をどう対処すればいいのかということです。例えば、「自分は誰かの重荷になっているんじゃないか」とか「以前は人の助けなんか必要なかったのに、突然、誰かに依存しなければならなくなってしまう」ことと、どう向き合えばいいのかということなんです。この変化は私自身にとってはすごくショックでした。
I mean, you need help to go up the stairs, you need help to walk, you need help to bathe, I mean, you really feel like a child like you're like, "I need help with all these things" and so I think being patient with yourself and asking for help when you need it.
階段を上る、歩く、お風呂に入る、といったことのために、誰かの助けが必要になるんです。本当に子供みたいに、助けを求めなくてはならなくなってしまうんです。なので、そんな自分を受け入れて、必要な時には助けを求めるということですよね。
That's an, that's great point, that's an awesome point, Lauren.
Lauren、感動しました。
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。
