Symptoms

[kdelap]

Hello--

What a great forum, I've gotten so much information that has been so illuminating.

I was diagnosed with BAV at 12 (I'm 38 now), and other than keeping me out of the military, never had any issues, until 3 years ago.

At that time, extreme fatigue drove me to my primary care who referred me to my cardio, because I hadn't had any tests done for quite awhile. I had an echo and a cardiac MRI done, and while I don't have the numbers, my cardiologist said we just have to see how it progresses, just be on the lookout for symptoms and return annually for checkups.

This question has probably been asked a zillion times, but my fear is I'm having symptoms, but I just don't know if they're real or imagined, perhaps through a heightened awareness. Is this a common occurence? Aside from the fatigue, I feel a fluttering in my chest, bloated, difficulty sleeping (when I lay on my side, my pulse quickens and I'm "aware" of my heart beating extremely loudly). While I was never a marathoner, I eat healthily and have always kept active until about 6 months ago, and my desire is just gone.

 

[Ross]

Hello and welcome to the forum.

It sounds like a mixture of both, symptoms and a heightened awareness. Best to get the copies of your medical tests and records and post some numbers for us to look at. Were not doctors, but we've certainly seen our share of reports where something should be done and maybe isn't being done.

 

[ALCapshaw2]

Did you tell your Cardio (or PCP) about the "fluttering"? That can be a symptom of a Heart Arrhythmia.
Apparently it was not active when you were examined by your Cardio (I *assume* you had an EKG beforehand).

The next usual step is for your Cardio to order a 24 (or 48) hour Holter Monitor to record your heartbeat for that period of time to see if there are any irregularities.

Your symptoms are certainly consistent with valve issues. It would help to know your Effective Valve Areas, Pressure Gradients, Ejection Fraction, and Heart Chamber Dimension. Go to the facility where you had your EchoCardiogram and ask for a copy of your records. You will have to sign a Release and they may have a charge (typically $1 per page). If they can't / won't give them to you immediately, ask them to mail the copies (you might not even be charged

'AL C'

 

[Bean Counter]

Welcome to this site!

My BAV was discovered during a routine medical exam and he noticed a murmur one day. They ran some tests and discovered my leaky valve. I was a competitive runner at the time and he told me that I could continue with running and we just needed to keep an eye on it. This was a shock to me as I felt great.

Over the next 2 years I felt the symptoms start showing up gradually including night sweats, fatigue (this has gotten worse over time) and rapid heart rate. I thought a lot of this was due to my marathon training. 2 weeks before the Chicaog marathon (Oct. 2009) I went to get his blessing and he said my condition was at the point that he did not feel comfortable with me running the race. He did not feel it was time for surgery yet as I was kind of in that gray zone. Once I started getting rapid heart beats a few months ago, he decided it was time to do the surgery. I did go through numberous tests (echos, MRAs, stress tests and most recenly I had to wear a cardio net monitor to monitor my heart rhythm).

I am scheduled to have the surgery done on June 21st. As stated above, I would throw some of your numbers up here and you will probably get lot of good feedback.

 

[tprice54]

While my experience is similar to Bean's, I had a cardio who told me I could tell when it was time, and sure enough, when these symtoms showed up (shortness of breath, fatigue,etc.). He didn't make me take anymore tests, we just scheduled the surgeon. Sure enough, the valve was toast! if you feel symtoms, I say get it over with.......

 

[Mentu]

Welcome to our little corner of the world. One of the first things I learned here was about the pushme pullyou relationship between many cardiologist and surgeons. My Cardiologist also counseled waiting and sent me to my surgeon when symptoms began interfering with my life. Shortness of breath, Palpitations (awareness of ones heartbeat), arrhythmia, fatigue, etc or in other words the usual suspects became my unwanted companions. What triggered the cardiologist was the appearance of chest pains. So I went to meet my surgeon.

My surgeon wasn't interested in my list of symptoms. Instead, he reviewed the results of my last echo-cardiogram and the heart cath done a few days before our visit. In his opinion, the test numbers were all he needed to know to be certain that the repair was needed very soon. He said that he would only be ambivalent about scheduling a person for surgery if the test results were still ok but the patient was, even so, experiencing symptoms.

We are left at times to negotiate this ambiguous position without benefit of a medical education. It isn't hard though to learn to read the reports that contain the numbers you need to know. Those numbers could suggest that you might want a second opinion.

Larry

 

[nngbwh]

Welcome to the VR family.

 

[epstns]

kdelap,
As others have opined, my guess is that this is a combination of both advancing condition and heightened awareness. I am in a "similar but different" situation, having aortic stenosis, but only very gradually advancing loss of exercise ability, etc. I am also a few years older (62), so it becomes more difficult to separate age-related progression from valve-related progression. As with you, I am no marathoner, and havenever run more than a few 10K's competitively. I have noticed a definite slow-down, but at this point my cardio and I are still waiting and watchine. My surgery will likely be within the next year or two.

Welcome to The Waiting Room. We'll try to make your stay here as pleasant as possible.