A few weeks ago, I also joined The Pectus Awareness and Support Foundation, at pectus.com The site is run by a 41 year old man who's had the Nuss procedure by Dr. Jaroszewski at Mayo in Phoenix, and at this writing, he is one year out post bar removal. The cool thing about the internet is that community is found anywhere. I have never met anyone with a hole in their chest, like I have.
The site is patient-run, but does have a lot of information about surgeons who do the Nuss and the Ravitch and where to find them. There is a system to rate the physician. (Which has upside and downside, and should be taken with a grain of salt.) (I'm a little wary of any type of "Angie's List for Doctors".) The site has four or five different journal articles uploaded, and links to some webinars (which I also plan to link to).
You have to be a member to get in and interact, which is good because people do post photographs of their chest. Given that I have created this site several weeks ago, and haven't opened it up to ANYbody yet and STILL won't post a photo of my own deformity might tell you that I'm not the only one that doesn't want to share photos of my jacked-up chest with people who don't understand.
I love the site, though. Being part of the forums gives me the privilege to listen to other people's stories. There are a handful of NPs on the site who work with pectus patients. But they interact the way the best nurses trying to facilitate a support group...they contribute facts here and there that may be helpful, but it is a discussion among patients. Because most pectus patients are teenage boys, there are many out there that are pretty freaked out. But there are several people my age, too, who've been able answer my questions about their experiences.
I get that it hurts. I don't underestimate that. It is going to SUCK, I'm sure. I don't ask, "Does it hurt?" but I do ask when people are able to go back to work. How is their perception of their activity tolerance post-procedure vs pre-procedure? (That being the golden question.) Does it feel like you can breathe? Are you still getting arrhythmias?
It's been a really great resource. I know you can't believe everything you read on the internet. But it's a nice community, and amazing to me sometimes how some people's posts affect me. It's like, "holy shit! That's totally how it is!" And that's been pretty cool.
/m
The site is patient-run, but does have a lot of information about surgeons who do the Nuss and the Ravitch and where to find them. There is a system to rate the physician. (Which has upside and downside, and should be taken with a grain of salt.) (I'm a little wary of any type of "Angie's List for Doctors".) The site has four or five different journal articles uploaded, and links to some webinars (which I also plan to link to).
You have to be a member to get in and interact, which is good because people do post photographs of their chest. Given that I have created this site several weeks ago, and haven't opened it up to ANYbody yet and STILL won't post a photo of my own deformity might tell you that I'm not the only one that doesn't want to share photos of my jacked-up chest with people who don't understand.
I love the site, though. Being part of the forums gives me the privilege to listen to other people's stories. There are a handful of NPs on the site who work with pectus patients. But they interact the way the best nurses trying to facilitate a support group...they contribute facts here and there that may be helpful, but it is a discussion among patients. Because most pectus patients are teenage boys, there are many out there that are pretty freaked out. But there are several people my age, too, who've been able answer my questions about their experiences.
I get that it hurts. I don't underestimate that. It is going to SUCK, I'm sure. I don't ask, "Does it hurt?" but I do ask when people are able to go back to work. How is their perception of their activity tolerance post-procedure vs pre-procedure? (That being the golden question.) Does it feel like you can breathe? Are you still getting arrhythmias?
It's been a really great resource. I know you can't believe everything you read on the internet. But it's a nice community, and amazing to me sometimes how some people's posts affect me. It's like, "holy shit! That's totally how it is!" And that's been pretty cool.
/m