Do you, do you prescribe like PT, cardiac rehab all that afterwards so they have like, like formal exercise after surgery before they get, let on their own and you get rejections?
I think it's everybody's different is what I usually do, okay? you know, I think if somebody's motivated and, and such and not scared, okay? some of the reasons I use, you know, cardiac rehab are one some people are not motivated so if I know that they're a slug, okay? Yeah, I'll send them to cardiac rehab because then they have to do it, okay?
And then other people, especially some people who had had an acute emergent surgery, okay? after they've been through this, you know, they're scared, I mean, you were one day, you were a normal young healthy person didn't have to worry about things and suddenly, okay? you've had cardiac surgery and so it's very, very scary and so cardiac rehab can be wonderful in an environment where you're supervised where they can guide you, you feel comfortable pushing yourself, so, so I think, you know, definitely do that.
PT, I use a lot of, okay? you know, especially if some, if we're a little late and the back is really tight. PT is a wonderful way to address that they loosen that up. If somebody has had a thoracic surgery, okay? absolutely everybody gets PT as soon as that wound is healed enough that, it's safe enough to begin PT. everybody should be PT. We'll get that flexibility back and such sternotomy a little less so but certainly I, I, would say probably about 30 of my patients do wind up going to PT at some point in the recovery process. I highly encourage it.
So, so generally if you're not, if you're not getting yourself active again you're just gonna be tired, you're not gonna regain yourself as quickly as you might otherwise, and if you push too hard, you'll overdo it and you'll feel it, will it lead to like worsening in your aorta and medical problems in the future if you overdo it. People are asking all these kinds of questions.
Generally not. I mean, you know, because usually you stop yourself after a while, okay? The last thing to learn is you shouldn't keep doing it, all right? You know, obviously if you're out here lifting hefty weights and get your blood pressure up that's, that's a real problem,but in terms of getting out walking and being active again, you know, you just sometimes just push too much and you just have to learn and say, "Okay, listen to your body." Okay? you know, okay, I can push a little bit, I shouldn't push the exhaustion, you know, because then you're going to pay a price.
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。
So David, some people actually asked, I mean, a lot of great questions but some people said, "Well what if you don't listen to your doctor's orders and what if you don't do keep your monitoring up and what if you don't do, we don't follow the exercise regimen that you should and you push yourself too much?", I mean, what do you say to those people?
Bad things happen to you. No, I mean, you know, you know, I mean, I think, you know, yes, everybody's a little different, you know, I think you should definitely talk to your doctor about it, you know, our advice is based on, you know, what's worked for our patients in the past, I mean, but it's across the average so we certainly tried, you know, we're basing that and, you know, everybody's a little different but, you know, I think there are certain consequences of it, I mean, you know, and I think, you know, my advice based on what works for, for the most people most times, right? and of course everybody's different.
You can try something different but there is a potential cost to it, right? So if you push too fast, you know, then, you know, people get pretty darn tired and that usually gets resolved pretty quickly because the next day you feel like you've been hit by a bus, so I usually tell patients, "Okay, the next day you feel like you've been hit by a bus while you push too far. Okay? Don't do that again, right?" so that one doesn't get repeated too often.
The ones who don't exercise and just sit at home, it just lingers, it really lingers the whole process lingers for a long, long time if you, if you really baby yourself.
And I think, sometimes, also like Dominga mentioned about tightness in the chest, you know, the, the staff emphasizes protecting your sternum, okay? Don't overdo it, all right? so and then just remember that, you know, it was put together with a lot of stainless steel wires. It's actually not that easy to break it. Don't try, you can but you haven't tried, right? and so you don't have to be that tightened and so stretching a little bit, especially after the first three or four weeks just loosen up the shoulders and stuff and because otherwise, you know, you wind up well, I mean, I'm sure you all remember right the part that was, the worst was really the between the shoulder blades after...
I don't mean to interrupt but I, that was one of the things I wanted to bring up because you don't, definitely just like you said how the fatigue is worse than the pain. I have to say the thing that shocked me the most wasn't even the fatigue because I, you know, people told me about that. It was the back pain. It was from laying on the OR table.
Well, someone's already but remember when you cut over somebody's sternum. The chest doesn't pop open. We have this ghastly device that looks like it's something from the middle ages to spread the sternum.
Okay, so they're very happy. There are no pictures tonight.
皆さん、良かったですね。画像はないようですので。
This is why I didn't want to know anything before I went into it.
だから私は手術前に何も知りたくないって言ったんですよ。
Right, this is where about loosening things up and a massage is wonderful, okay? and, you know, afterwards you know a heating pad, a massage and, you know, if you have somebody who's closely willing to give you a massage afterwards take it because it's really worth a lot it's wonderful, okay and they're not going to break you, okay? so, so the massaging the loosening up those back muscles wonderful thing to do.
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。
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?
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!"
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.
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...
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.
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...
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.
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?
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.
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.
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.
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."
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.
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。
I want to go to David for the next question. A lot of people asked about going back to exercise after their operation and after recovery or during recovery or what could they can do and so before I ask you guys, you know, about your lives I wanted to David first start talking about like, "What do you recommend after people's surgery?" "What can, what can they resume?" "Do they still have the same limitations?" Lots and lots of questions from everybody about this.
Sure, you know, it depends a little bit on the condition, Marfan syndrome versus Loeys-Dietz syndrome versus vascular EDS. It also depends on whether you've had a dissection or not and what the residual aorta looks like because that, you know, determines your level of risk.
But let's assume you have a prophylactic or replacement surgery and you have Marfan syndrome, okay? So the risk of having a subsequent downstream aneurysm or a dissection is still there but a lot less, right?
So generally I'll liberalize things, I mean, there's the immediate recovery period, I mean, obviously the initial period of protecting the sternum, you know, the first six weeks and such and then after that in terms of, you know, getting out walking for the longer term, you know, obviously relaxing but we tell people still don't go crazy, you're not superman. We did not, we did not build your aorta out of kryptonite or whatever, whatever we do, so, so but I will liberalize things.
And then, you know, certainly, you know, in the period leading right up to surgery, we tend to be very, very aggressive with, with medications in terms of, you know, we usually have the blood pressure just high enough so you can stand upright without fainting, right? So we usually back off on that a little bit and let you have a little more blood flow to your brain, okay?
Loeys-Dietz is obviously a little bit more challenging and there's a whole range because some Loeys-Dietz mirror more like Marfan syndromes, some are have a little bit more fragile vasculature.
And so I will probably keep the medication going a little bit more with my Loeys-Dietz patients and I probably, you know, I still will liberalize some because obviously the aortic root is, is the most deadly portion and so once you've got that fixed, you know, you know, if we get an aneurysm afterwards or dissection, fortunately you usually don't just drop that, which is good, which is good, so we, you know, and we have to balance life versus, you know, protecting you and balancing the quality of your life.
So generally we'll relax that. I still probably adhere to the general rule of, you know, moderate mild to moderate aerobic exercise, no heavy lifting that involves any straining, you know, I usually define that by, you know, if you can do it 20 times in a row without straining at the last rep you're probably okay. If you have to strain the 20 well lower the weights, okay?
And then so, you know, this is general guidelines and when it's always a negotiation, right? because we have to weigh, you know, what you like to do, what your desires are, your quality of life versus, you know, you know, risks your aorta and everybody's different and that balance is quite different to everybody and that's something that, you know, you should discuss that with your cardiologist or your cardiac surgeon and figure out, okay, what's a reasonable balance for you and where you are.
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。
ニックが手作業でボックスを組み立て、中にはオーダーメイドの「コナーキャンドル」とリストバンドを入れ、コナーが私達のコミュニティーにとってのインスピレーションであり、また希望の光であり続けるようにとの願いを込め、ハッシュタグ#Connor's Big HeartとBe the Lightのメッセージを添える予定です。
#Connor's Big Heartとは、The Marfan Foundation主催のNorthern California Walk for Victoryでの我が家のチーム名であり、The Marfan Foundationが、コナーへの哀悼を込めて家の前に植えてくれた、群生して咲き誇る赤のポインセチアの名称でもあります。
コナーが病院にいた際、弟を失ってしまったら家族はどうなってしまうのかという不安をあらわにしたニック。私達家族は強くなることを誓いました。コナーがいないからではありません。コナーのためにです。私達がLoeys-Dietz症候群である可能性は消えました。しかし、私達は戦い続けます。Loeys-Dietz症候群を多くの人に知ってもらうことで、コナーのような子どもたちが診断され、治療を受けられることを願って。そして、Loeys-Dietz症候群の皆さんに明るい未来がきっと訪れるように。コナーの死を乗り越えるにあたり、私達家族は、The Marfan Foundation、The Loeys-Dietz Foundation、The John Ritter Foundation for Aortic Healthに多大なる支援をいただきました。今度は私達が他のご家族の助けになりたいと思います。
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。
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.
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?
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."
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."
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.
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。
You know, so some people asked about the mental, the mental process as well. It's not just physical recovery and also as you move on in your life but, you know, during this, you know, post-surgical time or since then because there's a lot of stuff that you're facing now whether it's a new diagnosis or potentially more surgery in the future.
Do any of you see counseling to get outside help? Do you want to talk about it a little bit or what do you encourage people? I see Dominga nod, nodding crazy. So I know she likes this topic.
Absolutely I mean, yes, absolutely mental health I think is something that's very important for me before my surgery. David, I'm sure you can attest the fact. I didn't want to know anything. I didn't want to know. I just, I was like you're gonna, you're, I'm gonna wake up great cool that's all I need to know.
And after it was after the fact that I realized okay maybe I should have asked a couple more questions because then I'm, I'm experiencing things within my body that weren't expected and there is something to be said about how your, whereas even though your body is better medically it's still new to you and I think it that for me really got in my head whereas because I know this is better but it's not what I'm used to and that was the beginning of my mental health journey in accepting that aspect.
And then also accepting what actually I went through physically and, and learning more details and accepting what happened and, and all of what leads up to it the, I would say more of the the league, the legalese stuff that leads up to it of deciding who's going to have power of attorney over your medical decisions and things like that all of that sort of is what really pushed my, my mental health journey, I would say. There's so much to it.
She was and, and I, you know, this is something that I talked to, you know, I had a therapist and you know and I, I'm a believer in that, you know, it really helped me especially, you know, my friend's family but also seeking outside help but I have to say especially what like Dr. Liang said where a lot of the times it's in young adults or teens that usually have their first surgery. You know, we always think that we're invincible especially, you know, before and after surgery.
So I have to say like and this is Dr. Roman was my cardiologist who I will love to the ends of the earth and exactly what she said to me before I had my surgery is exactly what happens. You go in feeling like a million bucks even if you know or you have, you know, my aorta was growing exponentially but I didn't have any symptoms. You go in feeling like a million bucks as soon as you wake up you feel like an 18-wheeler hit you and that feeling doesn't go away for a little, a little while and as when she said it, it scared me. But it was almost better that I heard it.
Because when you wake up and you don't feel well you don't freak out because you're like this is actually how I'm supposed to feel and I think that's something especially in people our age and younger, you know, you think that you're not supposed to feel like this but that feeling is actually normal.
So Peter, from how about from a guy's point of view like, do you think about, you know, is that is it different for you or what would you feel like, you know, psychologically afterwards?
では、Peterには男性的な視点から術後のメンタル面について訊きたいと思います。
I mean, so I mean afterwards it kind of goes back to what we're talking about in the recovery you've got to grind it because this is your job.
Your job is to recover especially like in my case, in Dominga's case, in Victoria's case where we had something going on in the next couple of months that we had to get back to where it's a grind. And I went from being able to walk, you know, a couple miles, you know, around the block or, you know, down the street, you know, being able to walk a couple miles without any issue to I could barely get down to the end of my street two houses down afterwards
And it's that kind of toll to where you got to remember like you it takes a toll because you just because like what Victoria was saying that invincibility. You don't have it anymore. Now you're relearning how to do everything. You're relearning your limits on what you can and can't do on how far you can push yourself and it, it's a grind, you know, it's a grind and it definitely takes a toll, then we took a toll, you know, I needed to try, you know, do relearning my limits really learning what I had to do and then getting back into college and now I got to learn figuring out all that so a couple of grinds.
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。
