I have a bicuspid valve with severe stenosis. I want to thank you all for your assistance and information I gleaned from this forum. I will be getting a St. Jude mechanical this Friday. I went for catheterization last Friday and have good solid arteries and no need for extra work. A few things from my personal experience I would like to share:
Surgery now or later:
With BAV and arterial stenosis nobody knows when it will be too late, but to quote my cardiologist, nobody wants to suffer from the syndrome known as “sudden death.” He always pauses for effect before “sudden death.” I was asymptomatic last December when I had my last echocardiogram and recommendation for surgery. I was getting them yearly, but then every six months. My only symptom was one dizzy spell and some mild light-headedness. I found it hard to believe I needed surgery. The cardiologist said don’t wait more than 6 months, my surgeon agreed.
Both doctors told me that the problem with BAV stenosis will go along flat (i.e. no symptoms-not a problem), and then dramatically change (like a dirt road that comes up to a cliff, has a little down slope and then you drop straight down). This is somewhat my experience. In the last three months my symptoms have progressed so that now I get a little bit of lightheadedness every few hours and can’t stay awake past 8:30 (used to be 10:30), but still always get up at 5:30. I had a cold that was not too bad, but really put me to bed even earlier. This dramatic (for me) change in my strength in only about one month tells me, I need the surgery and am glad I planned in late December to do it in late February and did not wait until June as I was told I could.
Mechanical or Biological Valve:
I chose mechanical because I am 54 and do not like operations. I have had three and have had screw-ups with chronic problems after each one. None of the problems are major, but just enough for me to know, nothing is perfect. The first surgery left me with chronic pain in my left testicle due to the catheter hitting a nerve. The second and third surgeries were due to hernias caused by the first surgery. The third surgery was supposed to make me pain free in 2 months, it took 2 years. Warfarin does not scare me, because I know people on it. Plus, even w/o any anticoagulant, you still have a 75% chance of no problems. The kicker was when I found out (confirmed by my surgeon) that 30% of all those with a tissue valve need warfarin for other reasons sooner rather than later.
I did go and have a second appointment to discuss the Warfarin therapy with my cardiologist. I also had a second appointment with my surgeon to discuss valve type and the surgery itself. They both said the mantra here “both choices are good since you live.” However, as we discussed more, they both agreed with my “gut” that mechanical was a good choice for me and my life style. Partner with your doctors. Spend the extra money to see them more than once. Don’t read too much at one time it can be scary
Micromanage my care:
One of the things that really worried me was whether or not I was managing my care properly. Should I find the best doctor, the best hospital, the best valve? It was “driving me crazy”. I calmed down and realized that this operation is done many places around the country and world, not just in Cleveland or Mayo. I stuck with my current cardiologist and his hospital (it has a heart center). I decided to leave that decision to fate or God (pick whichever you like). My surgeon was chosen because he was next in line when my cardiologist called. My doctor for my catheterization was the one scheduled for the time period I wanted. Well luck or God was on my side. My surgeon is well respected and head of clinical research at my hospital. My catheter doctor is head of catheterization services. My hospital opened a new heart center in October, so everything is brand new and state of the art. Even better, when I went for the catheterization, all the nurses and staff were bright eyed and bushytailed over their new digs and equipment. So, have some faith, don’t worry if you can’t travel to the best and the brightest.
What about the valve, which one? This was easy, my surgeon can do many (including the much touted Onyx), but he recommended the St. Jude. He gave me good reasons why, and I’d rather have him comfortable, than try to second guess his choice given my ignorance.
Waiting Room:
I am a person blessed with a strong mental constitution. I weather problems pretty well. However, this “waiting room” has been the worst. I would get teary-eyed and choked up over silly stuff such as taking my daughter to the bus stop, listening to the Nigerians and Micronesians at my church sing their folk songs, reading the forum letters, reading scientific articles about BAV. This type of emotional response was new to me. It was good, because now I can understand how others feel in maybe less dramatic situations.
However each time I made a decision it got better until the next milestone and the next decision. For example, I decided not to schedule the surgery until I found out if warfarin would affect my hemorrhoids (it doesn’t). This calmed me down until after my colonoscopy when I needed to make the next decision, when to schedule the surgery. This calmed me down until I needed to make the next decision, when to tell the people at work. Then it was better until I needed to decide the valve type. Then I was better until some personal things got in the way. When I made each those decisions, it got easier, but the stress rose until the next decision. So my advice is only that it will get better each step of the way out of the waiting room. Each decision makes it easier to make the next.
Oh I started to worry about "pump head" because of what I read elsewhere and on this forum. But the continuing discussion here and the more recent articles calmed me down. It really can be a roller coaster. Don't believe everything you read, but somethings you've got to believe.
So I go in for the big one on Friday. Thanks for all the information. It can be really heartrending to read this forum. Hopefully this little missive is helpful to someone. Have faith.
Surgery now or later:
With BAV and arterial stenosis nobody knows when it will be too late, but to quote my cardiologist, nobody wants to suffer from the syndrome known as “sudden death.” He always pauses for effect before “sudden death.” I was asymptomatic last December when I had my last echocardiogram and recommendation for surgery. I was getting them yearly, but then every six months. My only symptom was one dizzy spell and some mild light-headedness. I found it hard to believe I needed surgery. The cardiologist said don’t wait more than 6 months, my surgeon agreed.
Both doctors told me that the problem with BAV stenosis will go along flat (i.e. no symptoms-not a problem), and then dramatically change (like a dirt road that comes up to a cliff, has a little down slope and then you drop straight down). This is somewhat my experience. In the last three months my symptoms have progressed so that now I get a little bit of lightheadedness every few hours and can’t stay awake past 8:30 (used to be 10:30), but still always get up at 5:30. I had a cold that was not too bad, but really put me to bed even earlier. This dramatic (for me) change in my strength in only about one month tells me, I need the surgery and am glad I planned in late December to do it in late February and did not wait until June as I was told I could.
Mechanical or Biological Valve:
I chose mechanical because I am 54 and do not like operations. I have had three and have had screw-ups with chronic problems after each one. None of the problems are major, but just enough for me to know, nothing is perfect. The first surgery left me with chronic pain in my left testicle due to the catheter hitting a nerve. The second and third surgeries were due to hernias caused by the first surgery. The third surgery was supposed to make me pain free in 2 months, it took 2 years. Warfarin does not scare me, because I know people on it. Plus, even w/o any anticoagulant, you still have a 75% chance of no problems. The kicker was when I found out (confirmed by my surgeon) that 30% of all those with a tissue valve need warfarin for other reasons sooner rather than later.
I did go and have a second appointment to discuss the Warfarin therapy with my cardiologist. I also had a second appointment with my surgeon to discuss valve type and the surgery itself. They both said the mantra here “both choices are good since you live.” However, as we discussed more, they both agreed with my “gut” that mechanical was a good choice for me and my life style. Partner with your doctors. Spend the extra money to see them more than once. Don’t read too much at one time it can be scary
Micromanage my care:
One of the things that really worried me was whether or not I was managing my care properly. Should I find the best doctor, the best hospital, the best valve? It was “driving me crazy”. I calmed down and realized that this operation is done many places around the country and world, not just in Cleveland or Mayo
. I stuck with my current cardiologist and his hospital (it has a heart center). I decided to leave that decision to fate or God (pick whichever you like). My surgeon was chosen because he was next in line when my cardiologist called. My doctor for my catheterization was the one scheduled for the time period I wanted. Well luck or God was on my side. My surgeon is well respected and head of clinical research at my hospital. My catheter doctor is head of catheterization services. My hospital opened a new heart center in October, so everything is brand new and state of the art. Even better, when I went for the catheterization, all the nurses and staff were bright eyed and bushytailed over their new digs and equipment. So, have some faith, don’t worry if you can’t travel to the best and the brightest. What about the valve, which one? This was easy, my surgeon can do many (including the much touted Onyx), but he recommended the St. Jude. He gave me good reasons why, and I’d rather have him comfortable, than try to second guess his choice given my ignorance.
Waiting Room:
I am a person blessed with a strong mental constitution. I weather problems pretty well. However, this “waiting room” has been the worst. I would get teary-eyed and choked up over silly stuff such as taking my daughter to the bus stop, listening to the Nigerians and Micronesians at my church sing their folk songs, reading the forum letters, reading scientific articles about BAV. This type of emotional response was new to me. It was good, because now I can understand how others feel in maybe less dramatic situations.
However each time I made a decision it got better until the next milestone and the next decision. For example, I decided not to schedule the surgery until I found out if warfarin would affect my hemorrhoids (it doesn’t). This calmed me down until after my colonoscopy when I needed to make the next decision, when to schedule the surgery. This calmed me down until I needed to make the next decision, when to tell the people at work. Then it was better until I needed to decide the valve type. Then I was better until some personal things got in the way. When I made each those decisions, it got easier, but the stress rose until the next decision. So my advice is only that it will get better each step of the way out of the waiting room. Each decision makes it easier to make the next.
Oh I started to worry about "pump head" because of what I read elsewhere and on this forum. But the continuing discussion here and the more recent articles calmed me down. It really can be a roller coaster. Don't believe everything you read, but somethings you've got to believe.
So I go in for the big one on Friday. Thanks for all the information. It can be really heartrending to read this forum. Hopefully this little missive is helpful to someone. Have faith.
