Personal Perspectives Panel: Life After Aortic Surgery
24:39-31:16
So that's great. Let's, let's see how it looks in real life. So Peter, let's go to you, so tell us about what you do and if it's and if it's really bad don't say it out loud. Let's get that, no just kidding. What do you do that your exercise?
素晴らしいお話でした。では皆さんに手術後の運動について伺いたいと思います。Peterからお願いしますが、本当につらかったということなら、何も言わないでください。というのは冗談です（笑）。どのような運動をしましたか？
Yeah, so post-surgery I went to college, I, since I can't play sports I became manager of the women's basketball team in at my school so I did a lot of work with them and practices. I mostly sat around at school, talk every once in a while they needed me as a body to be a defender, be a body that they can run over, you know, stuff like that but I also did ultimate Frisbee. I also did ultimate Frisbee where when I signed up I said,"Look, I gotta be able to sell myself out like if I get winded," I, like, "I'm done," like, "there's no, 'oh, one more point'," "No" where you'll see me sitting on the grass like "Have fun!"
術後、僕は大学に通い始めたんですけど、スポーツはできませんので、女子バスケットボールチームのマネージャーになりました。ほとんど座りっぱなしでアドバイスしたり、必要ならディフェンダーとして壁の代わりをしていました。それ以外にはアルティメットというフリスビー競技をしました。参加の申し込みをする時に「息が切れたら休みます」と伝えていました。なので「もう1点だけやろう」と言われても「いや、もう無理」と言って芝生の上に座って、声援を送っていました。
So yeah I and then senior, actually senior year college my roommate needed an extra body for an intramural league and same rules I told them I'm like "I'll help you but I got to sell myself out and I'm not risking it and run over." and it was a deal, so that's what so that's mostly what I did.
大学3年の時に、学内のリーグがあってルームメートから試合に出てくれって頼まれたんですけど、やっぱり同じように「出るけど、途中で抜けるから。気にしないでくれ」って答えました。スポーツに関しては、ほとんどこんな感じでした。
I also walked around the city of Boston a few miles every weekend, are almost every weekend so definitely, you know, I put I knew, I know my limits, you know, I know my body so I knew what, what I could do, where I could go and how I, and how I could do it without ??? straightening myself to the max so that's good...
ボストンの街は、ほぼ毎週歩き回っていました。歩くことで自分の限界を知るというか、してもいいことは何か、どこまでなら歩けるのか、最大限に力を出し切ることなく目的を達成するにはどうしたらいいのかといったことを学んでいったんです。
Yeah that's important accepting what you can do and what you can't do and taking charge of it yourself. Victoria, what about you?
そうですね。自分にできることとできないことを受け入れて、自ら管理するということは重要なことですね。Victoriaはどう？
I mean, that's what, you know, having, you know, one of these syndromes anyway is you have limitations and everyone's limitations are different so exercise was always something that I asked my cardiologist and surgeon about before surgery because that's always something that people have different limits on. You know, we obviously know no sports, no contact sports, nothing heavy but it's, you know, what really is the limit and after surgery, you know, I struggle with that, too.
Marfan関連疾患の方では、生活に制限がかかり、個人個人で異なるので、運動に関しては術前に循環器内科や心臓外科の先生に確認しました。スポーツ、特に接触を伴うようなスポーツや重いものを持ち上げることなどは禁止と言われていますが、重要なのはどれだけ制限が必要かということです。それについては、術後に私も苦労しました。
I would say I was probably back to somewhat normal of my same workout regime that I had before about four months after but what you really have to remember is that you're not going to immediately go right back to where you were before surgery and that was again with the mental thing is that even though I was able to physically handle the workout my body got tired about halfway through when normally it wouldn't and you have to do your workout...
私の場合、以前続けていた運動ができるようになるまで、4ヶ月ほどかかりました。覚えておかなければならないのは、術後すぐに以前の状態に戻ることはできないということです。メンタルの状態とも関わりますが、運動はできるんですが、身体の方が疲れてしまうんです。なので…
What's your workout? Tell us a little bit.
どんな運動をしたのか教えて下さい。
So I do low impact and also some cardio classes, so it depends on the day but I do like studio classes and bar classes stuff like that.
負担の少ない運動ですね、カーディオ・エクササイズとか。日によって違いますけど、スタジオで行うエクササイズやバーを使ったエクササイズです。
But I have to say like it's just you have to, just like Dr. Liang said, if something hurts or if you realize like, "Oh, I'm getting winded or tired," like Peter said you need to slow down and realize like, "Okay I'm not where I was before." It does take some time, I would say, it took me, I don't know, maybe a good 9 to 10 months before I really felt like myself again where I was able to do everything that I could pre-surgery and that's something that I think people really need to remember don't get down on yourself if it's not going as quickly as you thought to.
David先生もおっしゃっていたように、どこかが痛んだり、疲れていると感じた時には、自覚してペースを落とすんです。「前の自分じゃないんだから」ってことですね。Peterも言ってましたけど。術前にできていたことができるようになるまで、自分の場合にはたっぷり9～10ヶ月くらいかかりました。自分が考えていたよりも時間がかかったとしても、落ち込まないことですね。
Dominga, how about you?
Domingaはどう？
I was actually pretty fortunate that I had some credits in my senior year of college that I was able to play around with and knowing that I'd had surg..., that I was planning to have surgery, I enrolled in a yoga class and a couple of dance classes for college, performing arts college. What can you do?
私が幸運だったのは、大学4年生の時にいくつか単位が取れていたってことです。だから、遊ぶ時間がありました。心臓の手術をしなければならないのはわかっていたので、ヨガのクラスを一つとダンスのクラスをいくつか履修しました。舞台芸術系の大学だったんです。
But I'm actually so thankful that I did because especially in the chest areas being able to stretch again and being able to feel comfy because I was so frightened actually. I was so frightened of being able to stretch and push my shoulders back and really stretch my chest area because of, because of my sternum that it was really great to have that yoga class because it got me to be able to stretch again. It got me to feel comfortable with my body. It got and it let me focus on this, on the little things that I wasn't expecting to still hurt or have to, need to stretch.
この選択は正解だったと思っています。というのも、術後に、特に胸のあたりを伸ばすことができて楽に感じたからです。手術では胸骨を切開するので、胸や肩を伸ばしたり、元の位置に戻せるのか不安だったんです。ヨガのおかげで、身体を伸ばせるようになったり、身体が楽だと感じることができました。想定していなかった痛みやストレッチなどの小さな問題に集中できたんです。
And the dance class was the same way. It was allowing myself the movement and being and they were beginners dance classes, mind you, so nothing insane but it was one of those moments where I was able to just move my body and let it and let it get back into feeling somewhat normal and it was really great to have that opportunity.
ダンスも同じで、初心者向けのクラスだったんですけど、そのおかげで動けるようになって元の自分に戻れたような気がします。ヨガやダンスのクラスを受ける機会に恵まれたことは幸運でした。
And like Victoria it took a while. It's just but it but again you sit and you listen to your body and you let yourself going back to that mental health journey. You let yourself take a break. You forgive yourself for not being up to the standard that you would expect yourself to be because if you just expect yourself to just go back 100 percent. It, it's, it's going to take even more of a toll on yourself because you feel like you're, you're failing when you're not, you're just, you're just succeeding at a new level for yourself.
Victoriaが言ったように、回復までにはしばらくかかるので、休息しながら、落ち着いて身体と相談してこれから先のことを考えることが大事です。自分が想定したよりも回復が遅れたとしても、自分自身を許してあげてほしいです。頑張って100%に戻そうとすると、身体にはより大きな負担がかかってしまいます。新しい自分への変化は始まっているんです。
Yeah, that, that's good. Lauren, what about you?
そうですね。Laurenは？
So I like pre-surgery I wasn't super active, so for me they were like you need to walk a couple times a day, this many minutes, and I remember having a conversation with my cardiologist and like months after surgery because I was like, "Wow, I actually really enjoy walking. This is kind of weird," and having a conversation with my cardiologist and I'm like, "Well, how important it is, like 45 minutes a day, like is that really," and he's like, "You, everyone should be walking 45 minutes a day" and I was like, "Oh okay, that's normal."
実は私、手術前はそれほど運動していなかったんです。手術の後に「一日数回散歩しなさい」とか「これとこれをを長く続けなさい」とか言われたんです。手術から数ヶ月たってから、散歩って楽しいー、予想外だわ、なんて思うようになって、循環器内科の先生に、「歩くことって大事ですね。1日に45分ですよね。すごく楽しいです」って言ったら「誰でも1日45分は歩かなきゃだめです」って言われて。「えっそうなんですか。それが普通なんですね。エヘヘ」ってなりました。
And so for me I still like struggle with it because for me I like keep working and then like not walk but what I find is like that's a good time for me to just pause and enjoy the brain break is what I call it and just like just walking and actually it'll just make you happier and so for me walking and then this year I started using resistance bands just light resistance bands to work my upper body. Yeah, just walking and now I find that I love that 45 minutes a day just to like, "Nope I'm gonna go outside and walk or walk on the treadmill.
まだ運動には苦労してます。運動の後で、休むんですけど、その休憩時間が楽しくて。脳の休憩って自分では呼んでるんですけど。ただ歩くだけで、ハッピーになるんです。今年から、上半身を鍛えるためにエクササイズバンドを使った運動を始めました。やっぱりウォーキングの45分間が大好きで、「外に散歩に行こうかな、トレッドミルで歩こうかな」っていう感じですね。
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。
