Bradley White
Well-known member
Hi all,
I am new to this site and wanted to share my story with you all -- in hopes of educating and being educated. I am a 23 year old male. I was born with aortic stenosis (I believe I had a BAV). I was fine up until the age of 17 when I went in for my bi-annual check-up and my cardiologist informed me that my Aortic valve disease had progressed -- the leakage was severe (4+), my left ventricle was enlarged and thickened. I had 80% insufficiency and and 20% stenosis according to my surgeon.
To replace my valve they gave me the "options" of the Ross Prodecure, a homograft, or a mechanical valve. I put the word "options" in quotation marks because it was made very clear by the surgeon (Dr. James Quintessenza) and the cardios (Pediatric Cardiologists in St. Pete, FL) that I should have a Ross. They explained it kind of like "you could pick these other two valves (homograft or mechanical) but you would be wrong to do so." They told me I wouldn't need another surgery for 15+ years and that I wouldn't have to be on coumadin. They also told me that I would likely have a stroke sometime in my life if I had a mech valve even if I was on a coumadin. My surgeon had done something like 80 Rosses and never had a death. Everyone in my health care team seemed to be all for the Ross, so me and my parents decided to go ahead and get it. I had my surgery on 9/12/2000 at All Children's Hospital. This was at the beginning of my senior year of high school and it was truly the most anxious I have ever been in my life. I was terrified that I was going to die. I got through it by continually telling myself that all I have to do is survive this and I will be ok for the next 20 years and will be able get back to living my life.
Things were great for the first five days, but hours before I was supposed to be discharged my surgeon walks in tells me and I need another open heart surgery! I was absolutely devastated and extremely angry. The surgeon told me there was 3+ leakage in the autograft. He attempted to explain why, but I was to overcome with emotion to really pay attention. All that I remember was a feeling that I had been duped by this surgeon and my cardios. He told me it would be ok and it wasn't. In reotrspect, this was unfair to the surgeon, but I was 17 years old and had just had OHS so my feelings were understandable. He said he thought he could go in and "repair" the aurograft. I went into the surgery the next day, they did a TEE before the surgery and apparently the leakage was only minor or trace so they didn't do the second surgery. Both me and my parents were somewhat mystified by this. How come the regular echo showed 3+ leakage and the TEE didn't? But really I didn't worry too much about it, because I didn't have to have another surgery. I was thrilled I could go back to school and enjoy my senior year with all of my friends.
My personal life has been good since then. I finshed up high school in Tampa and attended Oberlin College (OH) graduating in three years with degrees in English and Biology. I am currently in my second year at Notre Dame working on my PhD in biology. I have a wonderful long-term girlfriend (see pic) who has been incredibly supportive.
However, the heart didn't do so well. It seemed like everytime I went back in to get checked up something had gotten worse. The leakage, the left ventricle, etc etc. About 4 separate times I though I was going to have to have another surgery, but then they would do a TEE or a cath and tell me that I didn't have to have another surgery. All of the agnst/uncertainty was terrible. It didn't help that my cardio always talked down to me, even when I pressed him for details. Perhaps this is because he is a pediatric cariologist and was not use to discussing things in so much detail with his pateints, but regardless it was annoying. It got to the point that I would become absolutely terrified the weeks leading up to one of my appointments. When I went this past December the cardio though I had a kinked artery. He told me I would need surgery and did a cath to confirm the artery was kinked. Well, it wasn't and I didn't need surgery. At this point I had really had enough.
I decided to be proactive and go to the Mayo Clinic last week. It was very hard choice to make. The cardios at Mayo told me that my autograft had moderate to severe leakage and that my aortic root was very big -- 52 mm. Furthermore, the homograft in my pulmonary position had moderate leakage. I had never heard a thing about my aortic root or my pulmonary valve before this. The doctors and surgeon at Mayo told me that 52 was very big but that my previos cardiologists hadn't been measuring the size of my aortic root until they did that cath in December and they measured in at 52 then too. So it is 52, but a "stable" 52 -- in that it hasn't gotten any bigger in he last 3.5 months. My Mayo docs seemed very frustrated that my previous cardios hadn't tracked the progression of the aortic root enlargement. At any rate, they said I could shcedule surgery or come back in August and see if the aortic root had enlarged anymore. I was worried with a root so big that I might have sudden death if I waited a few months, but they said this was extremely unlikely. So I will be going back in August and they have informed me that if the CT scan or the echo show that the root is bigger than 52 they are going to admit me right then and there.
Basically, they told me that I am going to need a mechanical valve in the aortic position, an aortic root replacement, and possibly another mech valve in the pulmonary position. They said they could do all of these at once. I am pretty scared at this point. Has anyone here ever had a procedure similar to this???? The surgeon said it was pretty complex and estimated the mortality rate at less than 5%. When it's my life, 5% is a lot! They told me about 2% for my Ross, so 5% seems kind of high. I am really sacred that I am not going to make it through this second surgery. I have so much going for me now and I really don't want to die! They told me to be prepared for surgery sooner rather than later.
I was also really scared about getting a stroke with a mech valve (much less two mech valves). Bu the doctors told me that this is very rare and they have never seen any brain damage from a mech valve induced blood clot in someome who manages their coumadin correctly. So now at least I am not so worried about this.
I have been almost fixated with thoughts of my own mortality since going to Mayo. To the point that I am up at night wondering what death will be like, pondering the meaning of life, etc, etc. I am not religious so I cannot find any comfort with that. Has anyone else had thoughts like these? Has anyone had success going to physciatrist concerning these thoughts?
I also am having a lot of resentment towards my first surgeon and cardios for selling the Ross as a god-send. It wasn't a god-send for me. It has turned me into a two valve patient. The cardios at Mayo told me the Ross has fallen out of favor and that they have seen "hundreds of failed Rosses over the last few years." This makes me almost sick to my stomach. But I am trying to not have any regrets about my first surgery and my choice. I did the best I could with the info I had.
Sorry for the long winded nature of this post, but it was therapeutic for me to tell the story and I really would appreciate any advice that anyone here could give me (either physical of psychological).
Thanks for reading,
Brad White
I am new to this site and wanted to share my story with you all -- in hopes of educating and being educated. I am a 23 year old male. I was born with aortic stenosis (I believe I had a BAV). I was fine up until the age of 17 when I went in for my bi-annual check-up and my cardiologist informed me that my Aortic valve disease had progressed -- the leakage was severe (4+), my left ventricle was enlarged and thickened. I had 80% insufficiency and and 20% stenosis according to my surgeon.
To replace my valve they gave me the "options" of the Ross Prodecure, a homograft, or a mechanical valve. I put the word "options" in quotation marks because it was made very clear by the surgeon (Dr. James Quintessenza) and the cardios (Pediatric Cardiologists in St. Pete, FL) that I should have a Ross. They explained it kind of like "you could pick these other two valves (homograft or mechanical) but you would be wrong to do so." They told me I wouldn't need another surgery for 15+ years and that I wouldn't have to be on coumadin. They also told me that I would likely have a stroke sometime in my life if I had a mech valve even if I was on a coumadin. My surgeon had done something like 80 Rosses and never had a death. Everyone in my health care team seemed to be all for the Ross, so me and my parents decided to go ahead and get it. I had my surgery on 9/12/2000 at All Children's Hospital. This was at the beginning of my senior year of high school and it was truly the most anxious I have ever been in my life. I was terrified that I was going to die. I got through it by continually telling myself that all I have to do is survive this and I will be ok for the next 20 years and will be able get back to living my life.
Things were great for the first five days, but hours before I was supposed to be discharged my surgeon walks in tells me and I need another open heart surgery! I was absolutely devastated and extremely angry. The surgeon told me there was 3+ leakage in the autograft. He attempted to explain why, but I was to overcome with emotion to really pay attention. All that I remember was a feeling that I had been duped by this surgeon and my cardios. He told me it would be ok and it wasn't. In reotrspect, this was unfair to the surgeon, but I was 17 years old and had just had OHS so my feelings were understandable. He said he thought he could go in and "repair" the aurograft. I went into the surgery the next day, they did a TEE before the surgery and apparently the leakage was only minor or trace so they didn't do the second surgery. Both me and my parents were somewhat mystified by this. How come the regular echo showed 3+ leakage and the TEE didn't? But really I didn't worry too much about it, because I didn't have to have another surgery. I was thrilled I could go back to school and enjoy my senior year with all of my friends.
My personal life has been good since then. I finshed up high school in Tampa and attended Oberlin College (OH) graduating in three years with degrees in English and Biology. I am currently in my second year at Notre Dame working on my PhD in biology. I have a wonderful long-term girlfriend (see pic) who has been incredibly supportive.
However, the heart didn't do so well. It seemed like everytime I went back in to get checked up something had gotten worse. The leakage, the left ventricle, etc etc. About 4 separate times I though I was going to have to have another surgery, but then they would do a TEE or a cath and tell me that I didn't have to have another surgery. All of the agnst/uncertainty was terrible. It didn't help that my cardio always talked down to me, even when I pressed him for details. Perhaps this is because he is a pediatric cariologist and was not use to discussing things in so much detail with his pateints, but regardless it was annoying. It got to the point that I would become absolutely terrified the weeks leading up to one of my appointments. When I went this past December the cardio though I had a kinked artery. He told me I would need surgery and did a cath to confirm the artery was kinked. Well, it wasn't and I didn't need surgery. At this point I had really had enough.
I decided to be proactive and go to the Mayo Clinic last week. It was very hard choice to make. The cardios at Mayo told me that my autograft had moderate to severe leakage and that my aortic root was very big -- 52 mm. Furthermore, the homograft in my pulmonary position had moderate leakage. I had never heard a thing about my aortic root or my pulmonary valve before this. The doctors and surgeon at Mayo told me that 52 was very big but that my previos cardiologists hadn't been measuring the size of my aortic root until they did that cath in December and they measured in at 52 then too. So it is 52, but a "stable" 52 -- in that it hasn't gotten any bigger in he last 3.5 months. My Mayo docs seemed very frustrated that my previous cardios hadn't tracked the progression of the aortic root enlargement. At any rate, they said I could shcedule surgery or come back in August and see if the aortic root had enlarged anymore. I was worried with a root so big that I might have sudden death if I waited a few months, but they said this was extremely unlikely. So I will be going back in August and they have informed me that if the CT scan or the echo show that the root is bigger than 52 they are going to admit me right then and there.
Basically, they told me that I am going to need a mechanical valve in the aortic position, an aortic root replacement, and possibly another mech valve in the pulmonary position. They said they could do all of these at once. I am pretty scared at this point. Has anyone here ever had a procedure similar to this???? The surgeon said it was pretty complex and estimated the mortality rate at less than 5%. When it's my life, 5% is a lot! They told me about 2% for my Ross, so 5% seems kind of high. I am really sacred that I am not going to make it through this second surgery. I have so much going for me now and I really don't want to die! They told me to be prepared for surgery sooner rather than later.
I was also really scared about getting a stroke with a mech valve (much less two mech valves). Bu the doctors told me that this is very rare and they have never seen any brain damage from a mech valve induced blood clot in someome who manages their coumadin correctly. So now at least I am not so worried about this.
I have been almost fixated with thoughts of my own mortality since going to Mayo. To the point that I am up at night wondering what death will be like, pondering the meaning of life, etc, etc. I am not religious so I cannot find any comfort with that. Has anyone else had thoughts like these? Has anyone had success going to physciatrist concerning these thoughts?
I also am having a lot of resentment towards my first surgeon and cardios for selling the Ross as a god-send. It wasn't a god-send for me. It has turned me into a two valve patient. The cardios at Mayo told me the Ross has fallen out of favor and that they have seen "hundreds of failed Rosses over the last few years." This makes me almost sick to my stomach. But I am trying to not have any regrets about my first surgery and my choice. I did the best I could with the info I had.
Sorry for the long winded nature of this post, but it was therapeutic for me to tell the story and I really would appreciate any advice that anyone here could give me (either physical of psychological).
Thanks for reading,
Brad White
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