Here I am, 17 days after surgery (I swear I didn't plan that) and still recovering. I planned to lay this out for you guys earlier, but the path toward normalcy has been taking some interesting turns so I thought I'd wait it out a bit longer so this post is a little more comprehensive concerning the experience as a whole. This explanation covers everything leading up to the surgery, the recovery, and would I can expect to see in the future as a result of my operation. I'm kinda treating it as a public journal entry so it's pretty dang thorough. If you want to see just the recent surgery stuff and onward, start at the paragraph with the asterisks.
When I hit puberty, it became clear that there was something abnormal about my chest. As I went through my teenage growth spurt, a dent in my chest (just below my pectorial muscles and beside the points of my ribcage) grew deeper and deeper pretty much throughout my life since then. Naturally, I went looking for answers with my parents leading the way. We visited with a doctor at Lakeview Hospital (I think) when I was about 14 and in 8th grade. Upon seeing my chest and physical form, she immediately suspected that I had Marfan's Syndrome.
What is Marfan's Syndrome? Here's the wiki (if you're interested): http://en.wikipedia.org/wiki/Marfan_syndrome It's genetic, it's not all too rare, and it's life-threatening at it's most severe levels. There are a bunch of symptoms associated with the condition, but generally people with Marfan's Syndrome have long bones, contributing to an unusual height:weight ratio, bad vision, and problems with major organs, particularly the heart. When I first took in all this information, I had reason to be concerned. I was definitely one of the taller kids around school and I had started noticing that my bare-eyed vision was failing me. To figure out if I had anything to worry about, we went straight the the diagnosis process.
For diagnosis, the doctor goes through five tests and if you test positive for Marfan's in three or more, you officially have it. The first two tests were immediately taken care of. I obviously had long bones, which was most clearly seen in my height, 11 1/2 shoe size, and long fingers, which have actually been extremely helpful in my viola/bass guitar playing endeavors. The next test I didn't really get, but when she saw stretchmarks on my back and the dent in my chest, I was marked positive for the 2nd test. I think it had something to do with my body not being ready physically for my growth spurt and therefore growing somewhat oddly, hence the stretchmarks and concave chest...who knows. So there I was, already one test away from being diagnosed. The next three tests were a bit more complicated.
For the third test, I was sent to an eye doctor. This is when I received my glasses and contacts for the first time. Though I was surprised by my worsening vision, it was far from a level that would warrant concern. Test three was a negative. The next two tests were both taken care of with a single CT scan; one involved my organs (mainly my heart) and the other focused on my brain and spinal cord. The organ test looks at organ alignment, as well as the function of the heart's valves and chambers. Other than the pressure the concave chest put on my heart and lungs, there were no problems there. The brain test, which looks at the dural sac (the membrane around the top of the spinal cord that can cause unnecessary pain throughout the body if it is awry), was also a negative. So with an overall two out of five tests marked positive, I wasn't diagnosed. The doctor, however, agreed that I definitely have a mild case of the condition, which a few of my older relatives on my mom's side show more subtle signs of.
Unfortunately, I wasn't incredibly relieved by this news. The look of my concave chest made me incredibly uncomfortable. I would swim with my shirt on or just not swim at all. In fact, now that I think about it, I haven't been in a public pool for about 2 1/2 years. In this way, I was able to hide it pretty easily. Not even my closest friends knew about it until I mentioned my recent surgery. Even more unsettling was what came on when I 16, maybe even 17 years old. When I would go out to play racquetball or even when I was getting prepared for a big viola performance, I would feel a fairly intense burning in my chest accompanied by a shortness of breath. This would always pass within minutes, but it certainly worried me. Around this time, I started hearing about an effective procedure that could fix it: The Nuss Procedure. I decided to visit another doctor, this time an orthopedic surgeon who excels at the operation: my hero Dr. Scaife.
About three months ago, I met with Dr. Scaife just to get an idea about how reasonable the operation could be considered in my case. This visit made it clear that the dent had gotten much deeper than it was before. Right after seeing my chest, Dr. Scaife said I was an excellent candidate for the surgery, but there was a problem. The surgery wasn't absolutely necessary, so there was a possibility that it would pass for cosmetic, rather than medical, which means I'd have no help from my insurance company. I was put through another CT scan to figure out my Haller index value. This number basically represents how much room there is for my organs based on the distance between my spine and the deepest point in the dent. Results showed that the operation was "reasonable, but not necessarily recommended." This proof and a few pics convinced my insurance company to support me. Now all that was left was the decision. The doctor said that most people that don't like the look of the concave chest do it, and that was a major aspect of my reason for visiting him in the first point. I knew very well, however, that I would be sacrificing about a month of my summer to do it, but they don't like doing this operation past age 19 so now was the time. After a few weeks, I decided to go with it. My main reason? I can honestly tell you that I had my imagined future spouse at the forefront of my mind throughout the decision process. A few prayers later and I really felt like this was something I was meant to go through. I'm still thinking have that mindset two weeks later.
The next few weeks were quiet in this matter. I went through some insane testing, finished school, and had a few excellent weeks to open the summer. I wasn't worried about the surgery at all. I was actually really looking forward to the very unusual experience. Then my extended family found out what I was planning and you know how grandparents can be...they were all seriously concerned and I kept trying to reassure them I wasn't worried! The days went quick...I visited with friends at the beginning of July, where lots of them found out. Then on the 4th of July, I visited both sides of the family, witnessed some fantastic aerial fireworks, was given a blessing, and bam...surgery day: July 5th. I had been thinking and preparing for so long and it still took me a bit off guard.
Now I've never had surgery (other than when I was two, which I obviously don't remember) so that morning was mre than interesting. I checked in at 6:45 AM at Primary Children's and then went through the prep involving the IV hookup and other typical stuff. Then they take my parents and I into the surgery prep waiting room where doctors/nurses/anesthesiologists come to discuss things and then take patients away one by one. That place was freaky. On one half they've got the young patients, all toddlers, which I can't see from where I'm seated. I'm in the half with only teenagers. My surgeon was busy with an emergency operation so I was delayed a few hours, which worried me, but then as I saw things happen around me in that waiting room throughout that time, I was somewhat reassured. A sixteen year old guy to my right was getting knee surgery and he seemed to be trying to force the idea out of his head. A fifteen year old girl on the opposite end of the room was having surgery on both knees and didn't look worried at all. Just in front of me, a seventeen year old girl was preparing for heart surgery. She had parents, grandparents, AND a teddy bear helping her through the wait so I was feeling lucky in comparison. The minutes went by alright with the help of my "Key to Recovery" playlist on my ipod. My surgeon came, my nurse came, and then my anesthesiologist came and took me away. We went straight for the OR, which was surprisingly bright compared to my prediction, so he could put an epidural into my spine between my shoulder blades. I laid down soon after and I was out.
***So what about this Nuss procedure? It's been used for about ten years since Dr. Nuss introduced it and has basically replaced the alternative, very painful operation used before. I had two horizontal incisions, one below each armpit, and an additional little prick on one side where a medical camera was inserted. A cresent-shaped, steel sheet (very thin; less than one inch wide; as long as my torso across) is inserted through one side and pushed through to the other. The operation took just over an hour; most of the time was spent experimenting with and reshaping the sheet (mine is actually assymetrical because of the shape of my chest) When the shape is right, the bar is flipped around, forcing the sternum out; the effect of the surgery is immediate. At the end, they stitch it to the edges of my ribcage on both sides where the muscle will later cover and secure it. I'll have it in me for three years so my chest with stay popped out. Check out more details and sample x-rays on the wiki site: http://en.wikipedia.org/wiki/Nuss_procedure
Here's exactly what it did to me:
Then I woke up with crazy muscle spasms. The nurses thought I was cold so they piled blankets on me, causing me to sweat a ton. I was glad to find out that I only had one bar in me because I had been told I might need two. I was drugged up so my mind was pretty dull, but I stayed awake and was talking normally with the nurses and my parents just minutes out of the surgery. Everyone seemed surprised that I could recollect my entire journey from the waake-up room to my personal hospital room. I could definitely feel the pain, but it seemed like it would be very easy to endure. I was continually told that the major pain was coming soon, but the cool thing is that it never did. Having an epidural meant that I could force cold, pain-relieving fluid into my spinal column every 20 minutes with the push of a button. During my entire stay at the hospital, I pushed that button a total of four times. I was up and walking the next day. The nurses outside my room did a double take when they saw how fast I was crusing through those hospital halls. Sleeping was easy aside from the irritating needle that was causing my back to sweat. I didn't mind the nurses bugging me. The food was fantastic (and seemingly unlimited)! The hardest thing was boredom and limited movement. Visits were nice, but every other time was a mind battle. I couldn't really hold my hands up long enough to read or do anything else for most of the time so I relied on my ipod. My 97 song setlist got really old and soon enough the music didn't do it for me either. I just wanted to get out of there!
My stay at Primary Children's was unique because of my relatively high age. I took care of my own medical dealings and found that nearly all of my 11 or so nurses had a tendency to get into really deep conversations with me because they never get the chance when they're primarily working with kids half my age or less. I had actually taken the opportunity of being bedridden to test out some facial hair (unexpected of me, I know!) so I really stood out. One time when I was out walking, I saw that 17-year-old just out of heart surgery walking around down the hall. That moment was a wake-up call for me. It just seemed strange being part of that group. I've rarely been the one that needed care or that was unable and it's crazy to think about how many people are in that situation while we're out living normally. That and other such lessons I was hoping to get out of that surgery were plentiful and powerful. I was inspired by my new thoughts and I think I was overall very optimistic through the tough time. I've always been incredibly grateful for my crazy awesome immune system and it turns out my healing magic is all-inclusive. My nurses were concerned when the epidural was about to come out, but then I got up to walk around about ten minutes after it happened. Over half of my nurses said I was the quickest to heal out of any patient they've ever seen from the Nuss Procedure. My surgeon was super impressed and I was ready to go home sooner than anyone expected.
Things have been rough since then. At the beginning, the only sources of pain were the muscles in my chest and under my arm, which were sliced up during the operation. Everytime I twist or get up from sitting or laying down, it feels like I'm pulling a muscle in my chest. Laughing is the absolute worst, which has been a formidable challenge because I was so happy to come home and I've had to deal with a humorous family and a cute dog. Coughing and yawning hurt bad (ever tried stopping a yawn? It's embarassing). So far I've held off all sneezes, but those are likely to kill me. I battle shortness of breath all the time; raising the maximum capacity of my lungs actually caused their size to temporarily diminish (isn't that weird?) so I have a little device to help me fill up my lungs to their cap, even though they freak out when they expand that much. Sleeping is ridiculous. I got an average of 4 hours a night for the first four days home. When I got to the point where I could get myself out of bed, I figured out that sleeping on the couch is much better. but when I wake up in the middle of the night, I can't fall asleep in the same position so to this day I move from place to place (last night my seven hours of sleep involved five different locations).
How am I now? Well I can finally manage lifting my hands above my head, which means I no longer have to shower with a swimsuit so I can get help. A couple days ago, the swelling in my chest dropped. That was the hardest mountain to climb. I can now constantly feel the pressure pushing my chest out. The nights aren't getting better (thankfully I can manage without much sleep; it's 2 AM right now!), but the days are awesome. I've loved having an excuse to play video games for like ten hours each day. I still can't do any sports for about another month, which is practically when college starts, but at that point I'll be back to normal. I still won't be able to do extreme movements; things like swinging a baseball bat or wakeboarding have been known to push the bar out of place, which is excruciating. I'll be able to go on a mission though and I'll probably be able to get the bar out within several days of my return. I think I've just passed the last peak of pain so all that's left is a bit of waiting in patience.
When I hit puberty, it became clear that there was something abnormal about my chest. As I went through my teenage growth spurt, a dent in my chest (just below my pectorial muscles and beside the points of my ribcage) grew deeper and deeper pretty much throughout my life since then. Naturally, I went looking for answers with my parents leading the way. We visited with a doctor at Lakeview Hospital (I think) when I was about 14 and in 8th grade. Upon seeing my chest and physical form, she immediately suspected that I had Marfan's Syndrome.
What is Marfan's Syndrome? Here's the wiki (if you're interested): http://en.wikipedia.org/wiki/Marfan_syndrome It's genetic, it's not all too rare, and it's life-threatening at it's most severe levels. There are a bunch of symptoms associated with the condition, but generally people with Marfan's Syndrome have long bones, contributing to an unusual height:weight ratio, bad vision, and problems with major organs, particularly the heart. When I first took in all this information, I had reason to be concerned. I was definitely one of the taller kids around school and I had started noticing that my bare-eyed vision was failing me. To figure out if I had anything to worry about, we went straight the the diagnosis process.
For diagnosis, the doctor goes through five tests and if you test positive for Marfan's in three or more, you officially have it. The first two tests were immediately taken care of. I obviously had long bones, which was most clearly seen in my height, 11 1/2 shoe size, and long fingers, which have actually been extremely helpful in my viola/bass guitar playing endeavors. The next test I didn't really get, but when she saw stretchmarks on my back and the dent in my chest, I was marked positive for the 2nd test. I think it had something to do with my body not being ready physically for my growth spurt and therefore growing somewhat oddly, hence the stretchmarks and concave chest...who knows. So there I was, already one test away from being diagnosed. The next three tests were a bit more complicated.
For the third test, I was sent to an eye doctor. This is when I received my glasses and contacts for the first time. Though I was surprised by my worsening vision, it was far from a level that would warrant concern. Test three was a negative. The next two tests were both taken care of with a single CT scan; one involved my organs (mainly my heart) and the other focused on my brain and spinal cord. The organ test looks at organ alignment, as well as the function of the heart's valves and chambers. Other than the pressure the concave chest put on my heart and lungs, there were no problems there. The brain test, which looks at the dural sac (the membrane around the top of the spinal cord that can cause unnecessary pain throughout the body if it is awry), was also a negative. So with an overall two out of five tests marked positive, I wasn't diagnosed. The doctor, however, agreed that I definitely have a mild case of the condition, which a few of my older relatives on my mom's side show more subtle signs of.
Unfortunately, I wasn't incredibly relieved by this news. The look of my concave chest made me incredibly uncomfortable. I would swim with my shirt on or just not swim at all. In fact, now that I think about it, I haven't been in a public pool for about 2 1/2 years. In this way, I was able to hide it pretty easily. Not even my closest friends knew about it until I mentioned my recent surgery. Even more unsettling was what came on when I 16, maybe even 17 years old. When I would go out to play racquetball or even when I was getting prepared for a big viola performance, I would feel a fairly intense burning in my chest accompanied by a shortness of breath. This would always pass within minutes, but it certainly worried me. Around this time, I started hearing about an effective procedure that could fix it: The Nuss Procedure. I decided to visit another doctor, this time an orthopedic surgeon who excels at the operation: my hero Dr. Scaife.
About three months ago, I met with Dr. Scaife just to get an idea about how reasonable the operation could be considered in my case. This visit made it clear that the dent had gotten much deeper than it was before. Right after seeing my chest, Dr. Scaife said I was an excellent candidate for the surgery, but there was a problem. The surgery wasn't absolutely necessary, so there was a possibility that it would pass for cosmetic, rather than medical, which means I'd have no help from my insurance company. I was put through another CT scan to figure out my Haller index value. This number basically represents how much room there is for my organs based on the distance between my spine and the deepest point in the dent. Results showed that the operation was "reasonable, but not necessarily recommended." This proof and a few pics convinced my insurance company to support me. Now all that was left was the decision. The doctor said that most people that don't like the look of the concave chest do it, and that was a major aspect of my reason for visiting him in the first point. I knew very well, however, that I would be sacrificing about a month of my summer to do it, but they don't like doing this operation past age 19 so now was the time. After a few weeks, I decided to go with it. My main reason? I can honestly tell you that I had my imagined future spouse at the forefront of my mind throughout the decision process. A few prayers later and I really felt like this was something I was meant to go through. I'm still thinking have that mindset two weeks later.
The next few weeks were quiet in this matter. I went through some insane testing, finished school, and had a few excellent weeks to open the summer. I wasn't worried about the surgery at all. I was actually really looking forward to the very unusual experience. Then my extended family found out what I was planning and you know how grandparents can be...they were all seriously concerned and I kept trying to reassure them I wasn't worried! The days went quick...I visited with friends at the beginning of July, where lots of them found out. Then on the 4th of July, I visited both sides of the family, witnessed some fantastic aerial fireworks, was given a blessing, and bam...surgery day: July 5th. I had been thinking and preparing for so long and it still took me a bit off guard.
Now I've never had surgery (other than when I was two, which I obviously don't remember) so that morning was mre than interesting. I checked in at 6:45 AM at Primary Children's and then went through the prep involving the IV hookup and other typical stuff. Then they take my parents and I into the surgery prep waiting room where doctors/nurses/anesthesiologists come to discuss things and then take patients away one by one. That place was freaky. On one half they've got the young patients, all toddlers, which I can't see from where I'm seated. I'm in the half with only teenagers. My surgeon was busy with an emergency operation so I was delayed a few hours, which worried me, but then as I saw things happen around me in that waiting room throughout that time, I was somewhat reassured. A sixteen year old guy to my right was getting knee surgery and he seemed to be trying to force the idea out of his head. A fifteen year old girl on the opposite end of the room was having surgery on both knees and didn't look worried at all. Just in front of me, a seventeen year old girl was preparing for heart surgery. She had parents, grandparents, AND a teddy bear helping her through the wait so I was feeling lucky in comparison. The minutes went by alright with the help of my "Key to Recovery" playlist on my ipod. My surgeon came, my nurse came, and then my anesthesiologist came and took me away. We went straight for the OR, which was surprisingly bright compared to my prediction, so he could put an epidural into my spine between my shoulder blades. I laid down soon after and I was out.
***So what about this Nuss procedure? It's been used for about ten years since Dr. Nuss introduced it and has basically replaced the alternative, very painful operation used before. I had two horizontal incisions, one below each armpit, and an additional little prick on one side where a medical camera was inserted. A cresent-shaped, steel sheet (very thin; less than one inch wide; as long as my torso across) is inserted through one side and pushed through to the other. The operation took just over an hour; most of the time was spent experimenting with and reshaping the sheet (mine is actually assymetrical because of the shape of my chest) When the shape is right, the bar is flipped around, forcing the sternum out; the effect of the surgery is immediate. At the end, they stitch it to the edges of my ribcage on both sides where the muscle will later cover and secure it. I'll have it in me for three years so my chest with stay popped out. Check out more details and sample x-rays on the wiki site: http://en.wikipedia.org/wiki/Nuss_procedure
Here's exactly what it did to me:
Then I woke up with crazy muscle spasms. The nurses thought I was cold so they piled blankets on me, causing me to sweat a ton. I was glad to find out that I only had one bar in me because I had been told I might need two. I was drugged up so my mind was pretty dull, but I stayed awake and was talking normally with the nurses and my parents just minutes out of the surgery. Everyone seemed surprised that I could recollect my entire journey from the waake-up room to my personal hospital room. I could definitely feel the pain, but it seemed like it would be very easy to endure. I was continually told that the major pain was coming soon, but the cool thing is that it never did. Having an epidural meant that I could force cold, pain-relieving fluid into my spinal column every 20 minutes with the push of a button. During my entire stay at the hospital, I pushed that button a total of four times. I was up and walking the next day. The nurses outside my room did a double take when they saw how fast I was crusing through those hospital halls. Sleeping was easy aside from the irritating needle that was causing my back to sweat. I didn't mind the nurses bugging me. The food was fantastic (and seemingly unlimited)! The hardest thing was boredom and limited movement. Visits were nice, but every other time was a mind battle. I couldn't really hold my hands up long enough to read or do anything else for most of the time so I relied on my ipod. My 97 song setlist got really old and soon enough the music didn't do it for me either. I just wanted to get out of there!
My stay at Primary Children's was unique because of my relatively high age. I took care of my own medical dealings and found that nearly all of my 11 or so nurses had a tendency to get into really deep conversations with me because they never get the chance when they're primarily working with kids half my age or less. I had actually taken the opportunity of being bedridden to test out some facial hair (unexpected of me, I know!) so I really stood out. One time when I was out walking, I saw that 17-year-old just out of heart surgery walking around down the hall. That moment was a wake-up call for me. It just seemed strange being part of that group. I've rarely been the one that needed care or that was unable and it's crazy to think about how many people are in that situation while we're out living normally. That and other such lessons I was hoping to get out of that surgery were plentiful and powerful. I was inspired by my new thoughts and I think I was overall very optimistic through the tough time. I've always been incredibly grateful for my crazy awesome immune system and it turns out my healing magic is all-inclusive. My nurses were concerned when the epidural was about to come out, but then I got up to walk around about ten minutes after it happened. Over half of my nurses said I was the quickest to heal out of any patient they've ever seen from the Nuss Procedure. My surgeon was super impressed and I was ready to go home sooner than anyone expected.
Things have been rough since then. At the beginning, the only sources of pain were the muscles in my chest and under my arm, which were sliced up during the operation. Everytime I twist or get up from sitting or laying down, it feels like I'm pulling a muscle in my chest. Laughing is the absolute worst, which has been a formidable challenge because I was so happy to come home and I've had to deal with a humorous family and a cute dog. Coughing and yawning hurt bad (ever tried stopping a yawn? It's embarassing). So far I've held off all sneezes, but those are likely to kill me. I battle shortness of breath all the time; raising the maximum capacity of my lungs actually caused their size to temporarily diminish (isn't that weird?) so I have a little device to help me fill up my lungs to their cap, even though they freak out when they expand that much. Sleeping is ridiculous. I got an average of 4 hours a night for the first four days home. When I got to the point where I could get myself out of bed, I figured out that sleeping on the couch is much better. but when I wake up in the middle of the night, I can't fall asleep in the same position so to this day I move from place to place (last night my seven hours of sleep involved five different locations).
How am I now? Well I can finally manage lifting my hands above my head, which means I no longer have to shower with a swimsuit so I can get help. A couple days ago, the swelling in my chest dropped. That was the hardest mountain to climb. I can now constantly feel the pressure pushing my chest out. The nights aren't getting better (thankfully I can manage without much sleep; it's 2 AM right now!), but the days are awesome. I've loved having an excuse to play video games for like ten hours each day. I still can't do any sports for about another month, which is practically when college starts, but at that point I'll be back to normal. I still won't be able to do extreme movements; things like swinging a baseball bat or wakeboarding have been known to push the bar out of place, which is excruciating. I'll be able to go on a mission though and I'll probably be able to get the bar out within several days of my return. I think I've just passed the last peak of pain so all that's left is a bit of waiting in patience.
So there it is. I'm now an enemy to metal detectors, a victim of Magneto's capabilities, and a partially bulletproof, regularly chested college freshman. It just makes me wonder...how do I go about telling someone I have a metal bar in my chest? They're not going to figure it out on their own and I can't live life surrounded by people who don't know I'm a cyborg! Nah...really though, these next few years are going to be kind of exciting and undeniably memorable. I feel like I made the right decision. I even had some tears going the first time I looked down. My family seems pleased, my closest friends seem glad for me, and everyone else...well I guess you've just found out. This is more than just a surgery to fix my body. I almost feel like it's fixing my life. It's funny knowing that I'm right in the middle of it. Maybe I'll post on this again later (this play-by-play turned out to be a beast so probably not), but in the meantime, don't give me any hugs!
Thanks for the explanation, Kyle! It was cool to hear about your whole experience. I was worried when I heard that you had surgery. Thank you for your example of being so optimistic! You are an amazing person.
ReplyDeleteKyle you are incredible! I really really enjoyed reading your thoughts and feelings from this experience you have had. Congratulations friend :)
ReplyDeleteI just found this blog by following a link from your "before" picture. My son is 15 1/2 and he's always had a sunken chest. It's gotten much more dramatic as he's quickly gaining height. He has a cardiologist appointment soon because more and more I'm suspecting Marfan's syndrome. He runs track and is frequently out of breath sooner than others. Can you post an update on how you are feeling? I'm happy to hear that your recovery went so well!
ReplyDelete