A couple of symptoms

[Jonny]

Hi

As I briefly explained in a previous post, I have been diagnosed with a bicuspid aortic valve at the age of 28 but haven't been told much more that by my doctor (such information seems less accessible in the UK via the NHS). More recently, I seem to have noticed a couple of things and I wondered if they might be a symptom, directly or indirectly, of my condition.

1. Extreme fatigue, particularly after eating. I'm finding it hard to get through the day at present as I feel like I constantly need to sleep. Sleeping for long periods doesn't appear to actually solve anything and it's certainly very noticable after eating a meal, even a light lunch at work.
   
2. Occasional pain behind my breastbone. I get short bouts of this which last approximately 20 minutes or so (on and off) once every 2 or 3 days. I'd describe it as somewhere between a burning feeling and an ache. It's noticeably painful although not excruciating, perhaps more noticeable because of where the pain seems to be coming from.

Any thoughts would be much appreciated. Thanks!

 

[Agian]

What does your latest echo show?

 

[Guyswell]

Your symptoms could be caused by aortic valve problems or something completely unrelated (like acid reflux and issues with your blood sugar after eating).

 

[big_L]

I'd second the opinion that you may be dealing with some other issue like acid reflux or heartburn on symptom #2. Are you on other meds? I can tell you that the ace inhibitor/HCTZ (lisinopril) that I was put on for HBP really slowed me down, fatigue-wise. I became an after lunch nap taker once I started these.

How do you handle physical exertion? This might be more telling. Obviously, if you've been told to limit your exertion, please do not go out and over-do it.

 

[epstns]

I can't offer any answers regarding pain, as I never had any -- but I can say that one of the biggest "pre-symptoms" I had of my worsening aortic stenosis was fatigue. I could push myself to run, bike, exercise or anything else, but I knew I was pushing hard to do it. Most days, I was looking for a nap after supper. When I finally told my cardio that I was ready for surgery, I told him that I was tired of being tired.

This all, however, was well after my echo results said I could have been a surgical candidate even earlier. My valve area was less than 1.0 cm2 when I finally opted for surgery. I had been noting a gradual decline in my exercise tolerance for some years prior to that, but the fatigue was not getting in the way of life, so I waited. If you can tell us your latest echo results, we may be able to draw some comparisons to our own histories that may help you to know if there is likely a connection.

 

[Paleowoman]

Hi Jonny,

I just read your original thread. I too am in the UK so I know what you mean by lack of information ! And I get Bupa and still lack of information compared to our US friends on this forum.

I agree with what others have said regarding your chest pain, but since your GP should now be taking you seriously why don't you go and see him and tell him your concerns ?

My heart murmur was first heard when I was about 25 but they must have had the kind of echocardiogram you had your first one on which didn't show anything even though they suspected it was a bicuspid aortic valve. Regardless, nothing happened until I was 53 and a doctor, listening to my chest suggested I see a cardiologist again. Now, seven years later, I am soon to face surgery. My cardiologist referred me to a surgeon two weeks ago BUT he didn't give me any choice so I am about to see another cardiologist, apparently a much better one, for a second opinion on surgeons. But I still don't know things like valve area size - I wonder why they don't tell us these things here ?

 

[Agian]

Why don't you do some 'research' on the available surgeons, find one with a good rep and then get a referral from your GP. There's heaps of stuff online about surgeons and what type of procedures they're good at.

 

[Rick]

I think that you need to separate if this is (i) a real heart issue that needs treatment (could be med changes etc) or (ii) something else. For this, I would go to the cardiologist and ask about an echocardiogram. Between now and then, I would take my meds, relax as much as possible and worry about it when you actually hear something to worry about. I hear somewhere that 2/3 BAVers do not require surgery ever and 1/3 do.
Best of luck,
Rick