Pectus-Patient Testimonial and Experience

Finally, uh, we have a, an esteemed patient, former patient, Rebecca Garcia's who underwent the procedure, and, uh, we were hoping you could give your perspective on your whole experience and whatever you'd like to tell us today. Um, I had the, uh, procedure done, um, August 1st of last year. Um, I was 21 years old. Um, I had previously had the, uh, Ravage procedure, um, in Atlanta, Georgia when I was, uh, 3 or 4 years old, um, and I still was having, um, chest pains and, um, trouble breathing and all the, all the uh classic signs. Um So, uh, after a lot of deliberation with meeting with Doctor Garcia the, uh, the winter before that, I decided to go through with it. Um, and, uh, I had a lot of pain when I was in the hospital. Um, But The thing about um the pain team here is they're amazing. Um, I wasn't in pain for very long. I was always taken care of immediately. Um, and then as I slowly progressed and got off my medications and things like that and got back into the swing of going home, um, it was a constant of My pushing myself to overcome the pain mentally, but is also taking care of it physically with the medications, but also um understanding that this is a hard procedure to uh recover from and that the medication can't take away everything that you're going through. Um, one of the things that really helped me was, um, meditation. Uh, when I met with Doctor Garcia, The first time after seeing him in the, um, since I was in the hospital, he recommended Jack Cornfield to me, and I watched his videos, and it really helped me mentally because Pus patients, we are used to. The way of life we, we have grown accustomed to, especially being a 21-year-old. I was used to how my chest felt all the time, and I was overall healthy besides the fact of, you know, the issues I had, but I've grown accustomed to them. So, to go home and not be able to turn, not be able to twist, not be able to lift more than 5 pounds, and all these things, it, it's mentally draining on you just as much as it is physically. Um. It puts you in a position that you feel you're dependent on people, and it's a hard thing. Because the physical results are there when you see that your sternum is raised and you finally feel like you have some kind of normalcy with how you look, um, but there's a lot of barriers to cross before you get to the point where you can be lifting weights and running and all those things, um. I had an overall great experience um at this hospital, and I would recommend it to anyone else. Um. I actually work here now, um, as a patient care assistant just because of the experience I had. Um. For me. The postoperatively, the best things for me were walking, staying active. Um, and are you still meditating? Still meditating. Um, big thing for me before I worked out was stretching. I used to never stretch, but now that I'm a, now that I'm a, uh, post pectus patient, um, I, stretching is huge for me. Um, I know that one of the, one of the medications that really helped me when, when I was getting off the pain medication at home was the Robaxin. Um, just because of the tightness in my chest, it's a really Difficult thing to explain. There's a lot of feelings that you just can't really describe of just pressure and um. It's just a new sensation. And then the Robaxin helps to relieve that, and then you start to loosen up, and then the swelling on your stabilizers goes down, um, and then you get the results that you, you want, um, 3 months later, and then lifting now I'm lifting weights. Um, you, Doctor Garcia made me promise to wait the 3 months, and I did, and then, um, I did the, the 3 months of waiting and uh I got in that weight room and took it easy, but uh I was worried because I was like, I don't want these bars to flip, you know, I, I mean, I've got metal bars in my chest. I don't want to, uh, you know, you're, you, you think I got something in my body, I gotta make sure. You know, but they're strong. They're, they're holding up. And after I waited 3 months and I eased into it, and now I'm stronger than ever in the weight room and running and all that stuff. So, yeah, so Cole, I don't know if there's a Todd, are there any other people who have questions there for Cole? Uh, not, well, I guess I have a question for Cole. Um, you, you know, it's interesting that one of the first things you said was how great the pain team was. Some complaints of patients, not necessarily Pus patients, is that they'll have pain and it's a big delay until they can actually get that pain relief. Yeah, um, from, from my standpoint, I, the delay was little to none, and that's, that was the hard part with, um, with my experience was, I would, I could go from being fine. To all of a sudden in the most severe pain and it was, it was just excruciating, but they were in the room right away trying to figure out what they're going to do to help, what they're going to do to help in the future so that this doesn't happen until we got it figured out. But I think, I think having a pain team and a protocol helps. Helps helps get the patients their their pain medicine faster because they don't have to wait for a doctor to get the order and all that. Oh, it was, it was, it was great, um, and I, I don't know what I would have done without them and with being able to call them at any time when I was at home, just with any questions about, um, you know, this is, this pain here is bothering me. OK, that's, that's normal. You should probably take, you know, um, Robaxin for that, or maybe, you know, do something else for that. They were always open to answer questions, but they were also there to help with the pain. Um, that's great. The greatest part about it was. There to the, to the surgery, there's a level of mentally you have to overcome a lot of things. There's a lot of pain and things like that, but there's only so much that the medicine can do, and the whole team was so great of meeting my needs of pain, but also trying to push me to make it through the surgery and post-operative. It sounds like a great success story. It was, thank you for telling us the story today, um. There's a few questions. I don't know if you wanna try to hit those in the last few minutes. OK, so, um, first question is, uh, well, there was a question about the preemptive pain, and Mark, I, I think we've addressed that, but I'll look back at your recent comments. I have to see what you just wrote, but, um, do you, there was a question about what you check. Systematically you screen for a metal allergy, but Mark said there was something else that you screened for. He was wondering, was it MRSA that you said, or MRSA or URSA. We screen for resistant staph, OK, and if they do have that, then we get swabbed. From the from the nose and from the underarms, OK. And then if they do have that, then we prepare them in a certain way per protocol. And was the Bactroban given intranasally? It is intranasally. OK. It's given twice per day for 7 days prior to surgery. OK, um, Cynthia, your question about the vacuum belt, I don't think anyone here uses the vacuum belt. So I have one patient you do. They were just wondering how I saw comments earlier about. Getting it on eBay, um, I, I don't know how it says how are people getting vacuum belts for patients who can't afford to buy it. Um, I don't know if that's, no, so what, what have you, you, yeah, so I have, so the way we did it is is that I communicated directly, um, with the folks over in, in Germany, give them the measurements, and then we bring them here. Uh, it's pretty expensive. Um, it's about, I want to say like $400 or $500. It's not, it's not OK. Um, important question. So let me start. Forget pectus. You do an, um, you do an Api, you do an umbilical hernia, something like that. When do you tell them they can return to full activity? I, I personally don't restrict there, no restriction. 2 weeks, 2 weeks, OK, so I'm between, I say if it hurts, don't do it. So I'm either a no restriction or a 2 weaker. Um, well, my logic is that kids are smarter than us. Yeah, OK. And if they're hurting, then they typically will sit down. So the qualifier I'll put in is, is that not, not all kids. So the qualifier is, is that that no organized sports or Dad is a football coach, I'll, I'll, I'll, I'll put something in there. But other than that, I mean, I'm fine. OK. So what about practice patients? So when do you let them return to full activity? So I let them return to full activity after 3 months. OK, 12 weeks. OK. Right, OK. All right, here's, all right, so what, what are, what is your postoperative instructions then? OK, so post for me, post-operative, I give them two sets of videos, um, because I think that after being relatively immobile, not that they couldn't do things, and I will also, I'm not naive. To know that the adolescents actually adhered to my 3 months no activities. They, uh, I have been, I have seen some of my patients doing things that they live in the neighborhood or something like that that they weren't supposed to be doing. But, um, after that 3 month period of time, I would recommend them stretching and core strength exercises, and I give them 2 videos. Uh, that have an audio as well as an actual depiction of how to perform, uh, and then, um, and then the other one is stretching or yoga because I think those two things are, and these are videos you made. No, these are videos that are available on YouTube, Peppa Peppa raspberry, so etc. Peppa raspberry, right, that's where, broken. And then, um, for our connective tissue patients, then, you know, Derek is very helpful as far as offering suggestions as far as that's concerned. OK, uh, we'll try to do some rapid fire here. First of all, Cynthia says, Victor, your kids are smarter than mine. All right, um, Colin asks, uh, how do you deal with flaring of the lower anterior ribs after the NUS procedure? OK, I, I find that a good percentage of those will, uh, sort of go away on their own. Uh, if they're older patients, one of the things that we saw that Becky and I saw when we were up in Mayo Clinic is that for the older patients, what she'll do is actually break the ribs below here, um, and just push down, but the kids are so flexible that when you do that. You don't get much of an effect, but, uh, and then the folks in Brazil, as you know, actually have a brace that they can use for that. But for me, I just watch and just tell them to be patient with it. I think it gets a little bit better over time. It's been my experience in, in a lot of kids. Um, Think. I think that's the rest are all variations of the same question, so, um. They were talking about sleeping on the side, sleeping on their side or the recliner. Yeah, I hold off on sleeping on the side, so I, but I mean, you know, the patients will limit themselves as far as sleeping on a recliner because that's where it's most comfortable. But really, you know, if they want to sleep on their slide, uh, if they try to do that because, oh gee, I sleep on my side, they're going to find it uncomfortable. And so, you know, if they're able to sleep on the slide side and they're comfortable doing it, then then that's fine. You know, we all move in our sleeps and if we think that we're just going to lie there and we're staying in that position, we know that that's not true, so. That help? I think that's it. I think we hit on most of the major questions. All right. Thanks everyone. Well, so I would say that that was an absolutely fantastic session for someone who's a naysayer a little bit, someone who's a little, are you, are you on camera? I am. Oh yeah, for someone who's a naysayer, I would say that I came into this, um. A little curious about, you know, really what is the reason we need to be advising this so much. I think that I, you know, I say this is cosmetic. I think I've been convinced about the cardiac effects. I've been taught about the use of MRI versus CT scan. I've understood, I understand more now about the use of these measurements and how they can not only help guide you, but also help you get these approved, um, and having actual data. Um, all the, the, the perioperative management pain control for me this has been very helpful for someone who doesn't do this a lot. So I would tell you that not only would I congratulate you on a fantastic session today, but the team that you've assembled here, the multidisciplinary approach, this holistic approach, uh, was very impressive. So congratulations. So I think we're going to end the session and uh again, so if I could, if I could have one final thing, Michael Taylor and other cardiologists, we were walking out and talking about it with Becky, stay tuned to our next global cast, OK, because we're going to be doing a study that he wants to do uh to look at our post-op patients because he feels that that what we have here uh and not published is something that we need to contribute to the literature as far as really showing what happens after the pectus repaired given. The findings that he has as far as pre-op that that has to be published because I think that everyone's gonna be very curious to see that. Um, so, um, yeah, I think that, that will be, so we'll have one part two at some point and we'll go, go over that. And speaking of part two, stick around, we have an hour break and then this afternoon we're gonna hit on Cloaca Pus Cloaca. There's not, not very similar, but we're gonna hit on both topics and uh. Again, uh, Jenny wrote in the thing about the CME and uh all the housekeeping stuff. Again, thank you very much. Yeah, I want to thank a shout out to Dr. Brown, uh, who really, really did the lion's share of this work. Thank you. Congratulations. So yeah, thank you, and we'll see you in about an hour.