Hi All
I was diagnosed with a bicuspid aortic valve a few months back, aged 28, just days after I found out my wife was pregnant with our first child. I live in the UK, where having read a lot of the posts on here, things seem to be handled a little different to the US. I'll try to keep my post as 'light' as possible; I'd really appreciate it if anyone could take the time to read it and share their thoughts and experience as above all else I'm feeling somewhat in the dark as to the significance of my condition.
A little background...
I was born with a heart murmur, and was aware of that growing up but had always been reassured by my parents and doctors that it was of no real significance. I had no real problems as a child, other than one occasion when I collapsed after suffering chest pains whilst on a local charity run with my dad - I would have been about 10 years old. I was taken to hospital and subsequently had an ECG and echocardiogram. Neither showed up any abnormality.
I had a pretty active childhood, playing football (soccer) regularly and playing tennis to a reasonably high standard. The only other note I'd make in this respect is that I'd always had a nagging feeling that I wasn't quite as fit as my peers generally. Even kids who didn't look in as good a physical shape as me seemed to have better endurance, but I never really thought about this too much.
As I entered my early twenties I started to notice a notable decline in my general fitness. In the main I put this down to the fact that I was not playing as much sport as I had in my teens, and maybe picked up one or two bad habits such as drinking a little more than I should, however part of the reason I was playing less sport was because I felt I was struggling to compete physically and often found myself feeling incredibly ill for hours afterwards if I'd really pushed myself as far as I could go.
About five years ago, whilst playing football, I started to notice chest pains again. Not excruciating pains, but certainly disconcerting. My fitness seemed to be getting worse, and I was starting to notice palpitations on a fairly regular basis. My sister had suffered a minor cardiac event around this time too, so I decided to get myself checked out. I had just moved to a new city, and so I went to a NHS walk-in centre where a nurse reluctantly performed an ECG (she felt it a waste of time given my age). She flippantly looked at my results, told me I had nothing to worry about, and then sent me on my way.
Only then, a couple of hours later, she called back. A senior doctor had looked at my ECG and was concerned. She said I needed to see my GP (general practictioner) - not in a week's time, but "today". That got me worried. My doctor didn't do much to reassure me. He nervously looked at my swiftly faxed ECG, left me to stew whilst he went to speak to a colleague and returned to inform me he was sending me to the local emergency chest pain clinic (which, despite the name, didn't have an appointment for me for 10 weeks). I pushed him to tell me what he thought might be the issue, at which point he reluctantly explained that he wanted to rule out left ventricular hypertrophy.
When I visited the clinic, I was given another ECG and sent to meet a cardiologist. He took a look at my new ECG, told me that it was fine and that I had nothing to worry about. I was too young to have cardiac problems. I wasn't entirely convinced, but who am I to argue with a senior doctor when I can write what I know about medicine on the back of a postage stamp. And so I left it there, at least for a few years.
Then, last year, it occurred to me that I was no longer playing any sport, running on the treadmill at the gym for any more than a few minutes was a real struggle and even basic things like walking to the top of the two flights of stairs in our house was leaving me out of breath. Not only that, but I as experiencing increasingly frequent episodes of chest pain and, more significantly, was beginning to get palpitations which coincided with extreme bouts of fatigue. They tended to occur in the early afternoon, and I was regularly finding it hard just to stay awake in the office.
And so I decided to go back to the doctors, who again agreed to refer me back to a cardiologist. This time I saw a different cardiologist, however his demeanor was much the same. His opinion was that I was merely unfit and I was made to feel a little like a time waster, however to his credit he nevertheless referred me for a further ECG, exercise ECG, echo and 48 hour monitor recording.
Shortly after, I was copied into a letter to my GP in which he declared his prediction that they would find no cardiac cause for my symptoms and that I was simply suffering conditioning issues. At this point, I nearly didn't attend those further tests however I'd come this far I decided I may as well finish the job, if only to set my mind at ease that I was merely a hypercondriac.
And so I awaited the results.
This February...
February was a big month for me. One Sunday, late in the month, my wife called me up to the bathroom in order to tell me that she was pregnant. I've not had many, if any, better feelings than that in my life. The following Tuesday I went for my results. I sat in the waiting room feeling inconvenienced rather than nervous. I'd pretty much been told that there was nothing wrong with me, and I couldn't help but feel a little out of place as I sat in a room at least 40 years the junior of anyone else.
Eventually, an hour or so after my original appointment time, it was my turn. The cardiologist flicked through my results. I sensed he hadn't read them prior to me walking through the door. He nonchalantly reeled off the findings of the various tests I had undertaken, all normal. I was, quite literally, about to get up from my seat and apologise for wasting everyone's time before he looked up and said "just one thing".
"You have a bicuspid aortic valve", he declared. It meant precious nothing to me - I'd never heard of it. Some discussion and drawings later, I'd had it explained to me that it was nothing to worry about, was quite common, and simply meant there was a risk that my valve might degenerate a little earlier in life than usual. He want on to say that he would like me to have another echo, as my original had taken place on an old machine that, apparently, didn't take clear images.
I wasn't overly concerned at this point, however as you'd expect upon leaving the hospital, much Googling ensued. It was at this point I became a little nervous.
I went for the extra echo, however other than a letter to suggest that I need another one in 2 years time I've had no more information whatsoever. Despite several valiant efforts to gain access to either my results or a cardiologist, I'm still none the wiser. All I know is I have a bicuspid aortic valve with some degree of regurgitation; I don't know if I have an aneurysm, stenosis or any other related complication.
In this respect I feel somewhat let down by the NHS. They've only given me part of the story and right now I don't know what my future looks like or what I should or shouldn't be doing. In the absence of any support from the professionals, I'd really appreciate any advice or experiences you could share with me.
A few questions...
Apologies for what's become a long post - this is pretty much just what I've bottled up in my head the last few months so it's good to get it out there. Any thoughts or advice would be genuinely very much appreciated.
Thanks for taking the time out to read.
Jonny
I was diagnosed with a bicuspid aortic valve a few months back, aged 28, just days after I found out my wife was pregnant with our first child. I live in the UK, where having read a lot of the posts on here, things seem to be handled a little different to the US. I'll try to keep my post as 'light' as possible; I'd really appreciate it if anyone could take the time to read it and share their thoughts and experience as above all else I'm feeling somewhat in the dark as to the significance of my condition.
A little background...
I was born with a heart murmur, and was aware of that growing up but had always been reassured by my parents and doctors that it was of no real significance. I had no real problems as a child, other than one occasion when I collapsed after suffering chest pains whilst on a local charity run with my dad - I would have been about 10 years old. I was taken to hospital and subsequently had an ECG and echocardiogram. Neither showed up any abnormality.
I had a pretty active childhood, playing football (soccer) regularly and playing tennis to a reasonably high standard. The only other note I'd make in this respect is that I'd always had a nagging feeling that I wasn't quite as fit as my peers generally. Even kids who didn't look in as good a physical shape as me seemed to have better endurance, but I never really thought about this too much.
As I entered my early twenties I started to notice a notable decline in my general fitness. In the main I put this down to the fact that I was not playing as much sport as I had in my teens, and maybe picked up one or two bad habits such as drinking a little more than I should, however part of the reason I was playing less sport was because I felt I was struggling to compete physically and often found myself feeling incredibly ill for hours afterwards if I'd really pushed myself as far as I could go.
About five years ago, whilst playing football, I started to notice chest pains again. Not excruciating pains, but certainly disconcerting. My fitness seemed to be getting worse, and I was starting to notice palpitations on a fairly regular basis. My sister had suffered a minor cardiac event around this time too, so I decided to get myself checked out. I had just moved to a new city, and so I went to a NHS walk-in centre where a nurse reluctantly performed an ECG (she felt it a waste of time given my age). She flippantly looked at my results, told me I had nothing to worry about, and then sent me on my way.
Only then, a couple of hours later, she called back. A senior doctor had looked at my ECG and was concerned. She said I needed to see my GP (general practictioner) - not in a week's time, but "today". That got me worried. My doctor didn't do much to reassure me. He nervously looked at my swiftly faxed ECG, left me to stew whilst he went to speak to a colleague and returned to inform me he was sending me to the local emergency chest pain clinic (which, despite the name, didn't have an appointment for me for 10 weeks). I pushed him to tell me what he thought might be the issue, at which point he reluctantly explained that he wanted to rule out left ventricular hypertrophy.
When I visited the clinic, I was given another ECG and sent to meet a cardiologist. He took a look at my new ECG, told me that it was fine and that I had nothing to worry about. I was too young to have cardiac problems. I wasn't entirely convinced, but who am I to argue with a senior doctor when I can write what I know about medicine on the back of a postage stamp. And so I left it there, at least for a few years.
Then, last year, it occurred to me that I was no longer playing any sport, running on the treadmill at the gym for any more than a few minutes was a real struggle and even basic things like walking to the top of the two flights of stairs in our house was leaving me out of breath. Not only that, but I as experiencing increasingly frequent episodes of chest pain and, more significantly, was beginning to get palpitations which coincided with extreme bouts of fatigue. They tended to occur in the early afternoon, and I was regularly finding it hard just to stay awake in the office.
And so I decided to go back to the doctors, who again agreed to refer me back to a cardiologist. This time I saw a different cardiologist, however his demeanor was much the same. His opinion was that I was merely unfit and I was made to feel a little like a time waster, however to his credit he nevertheless referred me for a further ECG, exercise ECG, echo and 48 hour monitor recording.
Shortly after, I was copied into a letter to my GP in which he declared his prediction that they would find no cardiac cause for my symptoms and that I was simply suffering conditioning issues. At this point, I nearly didn't attend those further tests however I'd come this far I decided I may as well finish the job, if only to set my mind at ease that I was merely a hypercondriac.
And so I awaited the results.
This February...
February was a big month for me. One Sunday, late in the month, my wife called me up to the bathroom in order to tell me that she was pregnant. I've not had many, if any, better feelings than that in my life. The following Tuesday I went for my results. I sat in the waiting room feeling inconvenienced rather than nervous. I'd pretty much been told that there was nothing wrong with me, and I couldn't help but feel a little out of place as I sat in a room at least 40 years the junior of anyone else.
Eventually, an hour or so after my original appointment time, it was my turn. The cardiologist flicked through my results. I sensed he hadn't read them prior to me walking through the door. He nonchalantly reeled off the findings of the various tests I had undertaken, all normal. I was, quite literally, about to get up from my seat and apologise for wasting everyone's time before he looked up and said "just one thing".
"You have a bicuspid aortic valve", he declared. It meant precious nothing to me - I'd never heard of it. Some discussion and drawings later, I'd had it explained to me that it was nothing to worry about, was quite common, and simply meant there was a risk that my valve might degenerate a little earlier in life than usual. He want on to say that he would like me to have another echo, as my original had taken place on an old machine that, apparently, didn't take clear images.
I wasn't overly concerned at this point, however as you'd expect upon leaving the hospital, much Googling ensued. It was at this point I became a little nervous.
I went for the extra echo, however other than a letter to suggest that I need another one in 2 years time I've had no more information whatsoever. Despite several valiant efforts to gain access to either my results or a cardiologist, I'm still none the wiser. All I know is I have a bicuspid aortic valve with some degree of regurgitation; I don't know if I have an aneurysm, stenosis or any other related complication.
In this respect I feel somewhat let down by the NHS. They've only given me part of the story and right now I don't know what my future looks like or what I should or shouldn't be doing. In the absence of any support from the professionals, I'd really appreciate any advice or experiences you could share with me.
A few questions...
- I appreciate that the information I've provided is vague, but what are the chances I am going to need open heart surgery in the near future, further down the line or not at all?
- I've read, possibly wrongly, that BAV does not necessarily need treating in every individual that has it. Is there a chance that I could live a normal life without ever needing surgical intervention on either the valve or aorta?
- Assuming I do need surgery, what is the availability of non or minimally invasive surgery like in the US currently? For some reason, I've never been able to stand being touched on the breastbobe (even by myself), so the idea of a sternotomy terrifies me!
- Are there any vices I simply should not indulge in? I'm not a heavy drinker but I do like a beer. Is there anything else - I know smoking is bad for example?
- Are there any sports or activities that I should or shouldn't do? I know I shouldn't lift weights, but I have picked up tennis again and would like to swim regularly.
- Any other advice you'd give to someone in my postition?
Apologies for what's become a long post - this is pretty much just what I've bottled up in my head the last few months so it's good to get it out there. Any thoughts or advice would be genuinely very much appreciated.
Thanks for taking the time out to read.
Jonny
