Ashkir
Active member
Wow. I cannot believe it has nearly been an entire year since I had my third open heart surgery. Let me give a crash course of how it went. ^^.
Well. I went in for a cardiac catheterization. I woke up in the middle of it in pain. I was given a mild sedative due to I was actually really freaked out about a giant hole in my groin. xD. I wanted to sleep through it, so they let me. I lost feeling in my right leg, of which they did the catheterization. So they quickly finished up, and the nurse helped calm me and talked to me the rest of the procedure.
The discharged papers got signed, and I was to go home. But as soon as I got up I collapsed and my face turned ghostly white according to the nurse. Even though it was a side effect he ordered that I stay overnight and they got me a room all to myself.
.
The next day, a group of doctors came in to talk to me and my mom and my dad. I was nineteen at the time, but my parents still came.. The results of the catheterization came in and they determined they needed to do an emergency surgery. They said if they waited a month I would've been dead. They also looked into my Kawasaki Disease, as they thought there was a possible relapse. (Which is even rarer because I have no Asian ancestry, I am Caucasian)
They decided they'd start the medications that night for my surgery. They called the surgeon in who would be performing it, Edwin Petrossian. He is the medical director of cardiovascular surgery at Children's Hospital, and he is a professor with Stanford University. He is most known for his expertise and interest in complex pediatric and congenital cardiovascular surgical repairs. He also often times guest teaches at the University of California, San Francisco.
All the doctors I had were some of the world's most renowned heart cardiologists and people certified in the fields. Many work with the University of California, San Francisco, Los Angeles or Stanford. My main cardiologist was actually named doctor of the year. Many of my doctors have a very special interest in my case because it was highly unusual, and anyone who has ever gotten anything similar to what I had actually has passed away before surgery can be done. I am the longest living survivor, and my congenital defect has no known name.
The surgeon, Edwin Petrossian explained to me in detail exactly what he plans to do. They decided they were going to use an experimental technique to attempt to use donor tissue to repair the valve, and cut my left ventricle in half by patching up half of it to be unused, because it had expanded far too much. If the repairs did not hold, they gave me options:
1) Mechanical valve.
2) Tissue valve.
3) Take my pulmonary valve and replace it with the aortic and bring in a tissue pulmonary.
He explained which each would have best effect for lifestyles. For example #3 was best for people that are very athletic. I was a best candidate for a mechanical valve. My parents argued over which was the best, but I choose mechanical valve myself because I had researched and talked to my doctors about their recommendations. The catheterization proved that my aortic valve was not shutting at all and that my left ventricle has grown too big to weaken the heart.
This surgery was supposed to be from five to six hours. The surgeon promised to clean up my old scar and to use new scaring techniques that just started getting used within a few months before my surgery. I died during the cracking of the chest cavity. I was dead for over a minute, and was successfully resuscitated. The doctors were afraid I would've received brain damage.
The old scar tissue from my previous surgeries attached itself to my heart and to my chest cavity. They couldn't see the scar tissue on xrays, and it was very unusual for them. My innominate vein ripped in half, as so did my aortic valve. They repaired the innominate vein using the experimental tissue procedures, and it held. But when they went to repair the aortic valve the damage was too great. They attempted but it fell apart quickly.
They replaced the valve with a mechanical valve from St. Jude Medical Research, and used tissue to close a part of the left ventricle. Afterwords, the doctor did what he promised and took the time to clean up the scars from the last surgeries (they've gotten hideous and took up a lot of my chest).
I was surprised he actually took the time to clean up the scars, as well, I had complications. The surgery that was to be 5-6 hours ended up 15-16 hours. I had a lot of complications after the surgery as well. They couldn't wake me up when they first tried to. My body wouldn't breathe for itself, and they felt the machine has done it too long. My body was extremely swelled up as well.
Within a few days, I started to breathe on my own again. About a breath per minute. My family was there from all over to be by my side, as nobody knew what the outcome was going to be. Did I have brain damage? Will I make it? Not even the doctors were sure. The surgeon, according to the nurse, did not go home for a week. He performed another surgery that week, but spent most of his time overseeing the team of nurses and doctors that had to attend to me. My lungs collapsed on the third day I believe. They were not fully drained yet, or working yet, but it did not help that they collapsed. I started coughing up blood. This freaked them out even further.
They even had a respiratory systems doctor at my side for nearly a few days straight, nearly nonstop. I had full time nurses at my side. There was not a moment where I did not have nurse overlooking me. Any time one left, another one came in. Even for lunch breaks or bathroom breaks. The doctors were always on call and checked in multiple times during the day and night.
When I regain consciousness, I realized I had lost the ability to speak. As much as I tried I couldn't speak. The nurses and doctors quickly realized I had regained consciousness, as the machines told them. They gave me a pen and paper to write on. I was able to write my questions. My doctor, the surgeon, Dr. Petrossian came in and told my family in front of me to not lie to me. He said lying made everything worse.
First thing I wrote was that I couldn't speak. The nurse quickly explained why. My lungs and throat were not cleared out yet. I then asked if I got a mechanical valve or not. My parents hesitated to answer the question. But, wow, it took FOREVER to write such simple questions.
Stuff kept coming up out of my mouth. And I kept feeling like I was choking, was either hold onto it, spit it into my eyes, or swallow it. So I kept asking for it to be suctioned out. The nurse said I was suctioning way too often. The doctor said just hand me the freaken suction thing and let me do it myself. It amazed them that I gagged myself because I can feel where the stuff was stuck and bothered me so much.
This one nurse...who looks a lot like my favorite was not my full time nurse, but took over when the full time one left, or when she needed help. This nurse came up with an idea to help clear my throat. As I kept grabbing the suction. xD. She got a really really small tube to add onto it. And she pushed it down my throat. This caused me to throw up all over the bedding and the floor. The nurse was freaked out because it was really bright red. They cleaned it up fast and she removed the tube. I still had my suction thing. xD. When I saw that nurse again I thanked her, because of this I was suctioning less, and I was able to speak very lightly. The doctor later said it caused my body to push out most of the stuff, which was actually really, really good for my lungs for some reason.
Well. A lot more stuff happened but none of it was really critical. My blood work was highly unstable for the entire month I stayed in the hospital. I know a month. ><'. Nearly a year later, it is still unstable, but doing much better. My heart is showing signs of recovery, and they're glad about it. ^_^.
I lost twenty pounds in the surgery, and I am officially underweight. I still need to gain weight, even a year later. Trying to gain weight is harder then it looks!
I did upload some photos to my photo album. :]. Feel free to show them to people you know that may undergo a heart surgery, or curious of direct after effects looks. ^^. http://rawr.mp/albums/4827 :]
Well. Sorry for the wall o' text. o.o.
Oh. Medications! I take 6 MG of warfarin on Mondays, Wednesdays and Fridays. 5½ on the other days. Aspirin 81 mg daily. 20 MG of Lisinopril. While I was in the hospital, they tried several different medications to see which I reacted best to. I originally started off taking about 2 MGs of warfarin daily; but the dose kept increasing. They feel my body is getting used to warfarin too quickly.
Well. I went in for a cardiac catheterization. I woke up in the middle of it in pain. I was given a mild sedative due to I was actually really freaked out about a giant hole in my groin. xD. I wanted to sleep through it, so they let me. I lost feeling in my right leg, of which they did the catheterization. So they quickly finished up, and the nurse helped calm me and talked to me the rest of the procedure.
The discharged papers got signed, and I was to go home. But as soon as I got up I collapsed and my face turned ghostly white according to the nurse. Even though it was a side effect he ordered that I stay overnight and they got me a room all to myself.
. The next day, a group of doctors came in to talk to me and my mom and my dad. I was nineteen at the time, but my parents still came.
. The results of the catheterization came in and they determined they needed to do an emergency surgery. They said if they waited a month I would've been dead. They also looked into my Kawasaki Disease, as they thought there was a possible relapse. (Which is even rarer because I have no Asian ancestry, I am Caucasian) They decided they'd start the medications that night for my surgery. They called the surgeon in who would be performing it, Edwin Petrossian. He is the medical director of cardiovascular surgery at Children's Hospital, and he is a professor with Stanford University. He is most known for his expertise and interest in complex pediatric and congenital cardiovascular surgical repairs. He also often times guest teaches at the University of California, San Francisco.
All the doctors I had were some of the world's most renowned heart cardiologists and people certified in the fields. Many work with the University of California, San Francisco, Los Angeles or Stanford. My main cardiologist was actually named doctor of the year. Many of my doctors have a very special interest in my case because it was highly unusual, and anyone who has ever gotten anything similar to what I had actually has passed away before surgery can be done. I am the longest living survivor, and my congenital defect has no known name.
The surgeon, Edwin Petrossian explained to me in detail exactly what he plans to do. They decided they were going to use an experimental technique to attempt to use donor tissue to repair the valve, and cut my left ventricle in half by patching up half of it to be unused, because it had expanded far too much. If the repairs did not hold, they gave me options:
1) Mechanical valve.
2) Tissue valve.
3) Take my pulmonary valve and replace it with the aortic and bring in a tissue pulmonary.
He explained which each would have best effect for lifestyles. For example #3 was best for people that are very athletic. I was a best candidate for a mechanical valve. My parents argued over which was the best, but I choose mechanical valve myself because I had researched and talked to my doctors about their recommendations. The catheterization proved that my aortic valve was not shutting at all and that my left ventricle has grown too big to weaken the heart.
This surgery was supposed to be from five to six hours. The surgeon promised to clean up my old scar and to use new scaring techniques that just started getting used within a few months before my surgery. I died during the cracking of the chest cavity. I was dead for over a minute, and was successfully resuscitated. The doctors were afraid I would've received brain damage.
The old scar tissue from my previous surgeries attached itself to my heart and to my chest cavity. They couldn't see the scar tissue on xrays, and it was very unusual for them. My innominate vein ripped in half, as so did my aortic valve. They repaired the innominate vein using the experimental tissue procedures, and it held. But when they went to repair the aortic valve the damage was too great. They attempted but it fell apart quickly.
They replaced the valve with a mechanical valve from St. Jude Medical Research, and used tissue to close a part of the left ventricle. Afterwords, the doctor did what he promised and took the time to clean up the scars from the last surgeries (they've gotten hideous and took up a lot of my chest).
I was surprised he actually took the time to clean up the scars, as well, I had complications. The surgery that was to be 5-6 hours ended up 15-16 hours. I had a lot of complications after the surgery as well. They couldn't wake me up when they first tried to. My body wouldn't breathe for itself, and they felt the machine has done it too long. My body was extremely swelled up as well.
Within a few days, I started to breathe on my own again. About a breath per minute. My family was there from all over to be by my side, as nobody knew what the outcome was going to be. Did I have brain damage? Will I make it? Not even the doctors were sure. The surgeon, according to the nurse, did not go home for a week. He performed another surgery that week, but spent most of his time overseeing the team of nurses and doctors that had to attend to me. My lungs collapsed on the third day I believe. They were not fully drained yet, or working yet, but it did not help that they collapsed. I started coughing up blood. This freaked them out even further.
They even had a respiratory systems doctor at my side for nearly a few days straight, nearly nonstop. I had full time nurses at my side. There was not a moment where I did not have nurse overlooking me. Any time one left, another one came in. Even for lunch breaks or bathroom breaks. The doctors were always on call and checked in multiple times during the day and night.
When I regain consciousness, I realized I had lost the ability to speak. As much as I tried I couldn't speak. The nurses and doctors quickly realized I had regained consciousness, as the machines told them. They gave me a pen and paper to write on. I was able to write my questions. My doctor, the surgeon, Dr. Petrossian came in and told my family in front of me to not lie to me. He said lying made everything worse.
First thing I wrote was that I couldn't speak. The nurse quickly explained why. My lungs and throat were not cleared out yet. I then asked if I got a mechanical valve or not. My parents hesitated to answer the question. But, wow, it took FOREVER to write such simple questions.
Stuff kept coming up out of my mouth. And I kept feeling like I was choking, was either hold onto it, spit it into my eyes, or swallow it. So I kept asking for it to be suctioned out. The nurse said I was suctioning way too often. The doctor said just hand me the freaken suction thing and let me do it myself. It amazed them that I gagged myself because I can feel where the stuff was stuck and bothered me so much.
This one nurse...who looks a lot like my favorite was not my full time nurse, but took over when the full time one left, or when she needed help. This nurse came up with an idea to help clear my throat. As I kept grabbing the suction. xD. She got a really really small tube to add onto it. And she pushed it down my throat. This caused me to throw up all over the bedding and the floor. The nurse was freaked out because it was really bright red. They cleaned it up fast and she removed the tube. I still had my suction thing. xD. When I saw that nurse again I thanked her, because of this I was suctioning less, and I was able to speak very lightly. The doctor later said it caused my body to push out most of the stuff, which was actually really, really good for my lungs for some reason.
Well. A lot more stuff happened but none of it was really critical. My blood work was highly unstable for the entire month I stayed in the hospital. I know a month. ><'. Nearly a year later, it is still unstable, but doing much better. My heart is showing signs of recovery, and they're glad about it. ^_^.
I lost twenty pounds in the surgery, and I am officially underweight. I still need to gain weight, even a year later. Trying to gain weight is harder then it looks!
I did upload some photos to my photo album. :]. Feel free to show them to people you know that may undergo a heart surgery, or curious of direct after effects looks. ^^. http://rawr.mp/albums/4827 :]
Well. Sorry for the wall o' text. o.o.
Oh. Medications! I take 6 MG of warfarin on Mondays, Wednesdays and Fridays. 5½ on the other days. Aspirin 81 mg daily. 20 MG of Lisinopril. While I was in the hospital, they tried several different medications to see which I reacted best to. I originally started off taking about 2 MGs of warfarin daily; but the dose kept increasing. They feel my body is getting used to warfarin too quickly.
