Hi,
I'm not sure I'm going to have anything new to say, gauging from many of the posts on this forum it looks like many of you are in the same boat as me! But I just thought I would say hello and share my story, since I'll likely be hanging out around here now that it's my turn to get my valve surgery.
I was born with a bicuspid aortic valve, and have had echos every year of my life since I can remember. I knew this day was coming, every year I kinda felt like I was rolling the dice. Putting this out of my mind and just sticking to the exercise restrictions (no valsalva, that's it) has always been a yearly practice in anxiety management. Well, after moving to Aurora Colorado three years ago and finding a new cardiologist, he recommended I get on Dr. Firstenberg's bicuspid aorta patient registry so that they can review my case. This group specializes in my (our?) condition, and they were a little more alarmed then everyone I've seen before me - I've never even heard the term "aortic aneurysm" before this. What a random stroke of luck moving 10 minutes away from one of the best centers for cardiothoracic surgery in the Denver area! Fast forward a couple of years, and several CT scans, to a few weeks ago to when I got the news that while my aortic aneurysm has remained relatively stable (~4.9cm, I'm 6'2" 180lbs M), the aortic stenosis on the valve has progressed for some reason. After my CT scan this year, I was told I needed to start planning for surgery, although it wasn't an emergency and I theoretically could wait. After giving it some thought the idea of having this hanging over me for months sounded terrible, so I decided that I would have the surgery a month out.
What the hell, 2020 has really sucked balls anyway, just pile it on.
That was about three weeks ago, I've having the surgery on August 10th. My surgeon recommended the On-X valve for it's lower bleeding risk, so that's what I chose. I feel like going mechanical here is a no brainer since I'm only 29 (30 in Oct, almost made it), and I never ever ever ever want to go through this again if I can help it. I was told I would have no physical restrictions anymore, and that I should just be careful about falls. Run, lift weights, longboard, whatever. One of the things I was told that really helped me was, "We are not just saving your life here, we are giving you back the life you want to live." That was nice to hear. One of the things I'm the most worried about though is the noise of the valve. Like I can deal with the warfarin, but the noise sounds rough. She (my surgeon) says she's installed hundreds of On-X valves, and has never been able to hear them sitting in front of them in the same room, and that it's rarely heard by the patient after a while. That sentiment was reflected by my echo tech last week. But from the things I've read here, that sounds unlikely.
Anyway, I know that was long, thank you if you've made it this far. This has truly been a transformative experience, but I'm doing "okay" and trying to make peace with my decision. I'm trying to look at it like I'm getting a new and shiny replacement for my old "rusty" busted valve, and that I'll be better than ever in time. I wish you all the best in your journey as well.
To end on a somewhat crude, but funny experience I had just yesterday - I was getting prepped for a cath lab imaging of my coronary arteries (just so they were sure there were no surprises waiting) through the artery in my wrist. Kinda last minute they told me they would have to prep my groin in case they were unable to go through my arm. Before I knew what was happening, one of the nurses pulled out this electric razor and just started shaving my crotch out of freaking nowhere. My wife thought it was hilarious, and was trying so hard not to laugh. Meanwhile one of the other nurses is just chatting with me about the procedure, and I interrupt her to say "I'm sorry, I'm having a really hard time focusing on anything you are saying right now." My wife loses it and starts cracking up, so I start laughing, then all the nurses start laughing. So I'm laying here, naked, getting my pubes shaved while four women in the room are laughing about it, it was pretty funny. Sorry, I'm sure some of you don't want to read that, but they don't tell you this stuff going in!
I'm not sure I'm going to have anything new to say, gauging from many of the posts on this forum it looks like many of you are in the same boat as me! But I just thought I would say hello and share my story, since I'll likely be hanging out around here now that it's my turn to get my valve surgery.
I was born with a bicuspid aortic valve, and have had echos every year of my life since I can remember. I knew this day was coming, every year I kinda felt like I was rolling the dice. Putting this out of my mind and just sticking to the exercise restrictions (no valsalva, that's it) has always been a yearly practice in anxiety management. Well, after moving to Aurora Colorado three years ago and finding a new cardiologist, he recommended I get on Dr. Firstenberg's bicuspid aorta patient registry so that they can review my case. This group specializes in my (our?) condition, and they were a little more alarmed then everyone I've seen before me - I've never even heard the term "aortic aneurysm" before this. What a random stroke of luck moving 10 minutes away from one of the best centers for cardiothoracic surgery in the Denver area! Fast forward a couple of years, and several CT scans, to a few weeks ago to when I got the news that while my aortic aneurysm has remained relatively stable (~4.9cm, I'm 6'2" 180lbs M), the aortic stenosis on the valve has progressed for some reason. After my CT scan this year, I was told I needed to start planning for surgery, although it wasn't an emergency and I theoretically could wait. After giving it some thought the idea of having this hanging over me for months sounded terrible, so I decided that I would have the surgery a month out.
What the hell, 2020 has really sucked balls anyway, just pile it on.
That was about three weeks ago, I've having the surgery on August 10th. My surgeon recommended the On-X valve for it's lower bleeding risk, so that's what I chose. I feel like going mechanical here is a no brainer since I'm only 29 (30 in Oct, almost made it), and I never ever ever ever want to go through this again if I can help it. I was told I would have no physical restrictions anymore, and that I should just be careful about falls. Run, lift weights, longboard, whatever. One of the things I was told that really helped me was, "We are not just saving your life here, we are giving you back the life you want to live." That was nice to hear. One of the things I'm the most worried about though is the noise of the valve. Like I can deal with the warfarin, but the noise sounds rough. She (my surgeon) says she's installed hundreds of On-X valves, and has never been able to hear them sitting in front of them in the same room, and that it's rarely heard by the patient after a while. That sentiment was reflected by my echo tech last week. But from the things I've read here, that sounds unlikely.
Anyway, I know that was long, thank you if you've made it this far. This has truly been a transformative experience, but I'm doing "okay" and trying to make peace with my decision. I'm trying to look at it like I'm getting a new and shiny replacement for my old "rusty" busted valve, and that I'll be better than ever in time. I wish you all the best in your journey as well.
To end on a somewhat crude, but funny experience I had just yesterday - I was getting prepped for a cath lab imaging of my coronary arteries (just so they were sure there were no surprises waiting) through the artery in my wrist. Kinda last minute they told me they would have to prep my groin in case they were unable to go through my arm. Before I knew what was happening, one of the nurses pulled out this electric razor and just started shaving my crotch out of freaking nowhere. My wife thought it was hilarious, and was trying so hard not to laugh. Meanwhile one of the other nurses is just chatting with me about the procedure, and I interrupt her to say "I'm sorry, I'm having a really hard time focusing on anything you are saying right now." My wife loses it and starts cracking up, so I start laughing, then all the nurses start laughing. So I'm laying here, naked, getting my pubes shaved while four women in the room are laughing about it, it was pretty funny. Sorry, I'm sure some of you don't want to read that, but they don't tell you this stuff going in!
