MelMcIntosh
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MelMcIntosh, May 7,  2020  3:48pm EST

Quadricuspid Aortic Valve

Hello! Eight years ago I was diagnosed with Quadricuspid Aortic Valve it's pretty rare and I was curious if anyone else on here has been diagnosed with the same condition. I've been monitored by cardiology ever since but my most recent testing in Feb (MRI, echocardiogram, ecg) revealed that my aortic valve is leaking severely and my left ventricle is enlarged. The cardiologist has recommended that my aortic valve be replaced within the next year. I'm 38 years old, healthy, active and really was not prepared for this news. 
 

To date I've been classified as "asymptomatic" and was told that one of the main symptoms to be aware of is fatigue. "Fatigue" is hard to classify, I'm wondering if anyone can share how they knew/realized that their fatigue was heart related and not regular run-of-the-mill everyday life related. 
 

As a side note, Ive read through this site and I'm realizing that I could very well be moving into the realm of "symptoms" I'm scheduled to see the cardiologist again in August and I've notified them about my recent concerns, I'm just interested in the experiences of others.

 

Thank you. 

3 Replies
  • AmbassadorMR
    AmbassadorMR, May 10,  2020  10:39am EST

    Hello Mel and welcome to the support site. You're in the right place to begin a dialogue about your condition with those of us who have been through our own challenges with the diagnosis and treatment of our heart valve *******.

    I have not had personal experience with "quadracuspid" aortic valve ******* but from your description it is a congenital defect of the aortic valve leaflet structure along the lines of my own "bicuspid" aortic *******. A bicuspid (two) defect is of course the more common issue but having four leaflets instead of the normal three obviously leads to problems with valve integrity over time. The typical result of abnormal aortic valve leaflet structure is stenosis (narrowing of the valve) or leakage (regurgitation) both of which lead to abnormal flow and pressures that definitely need to be corrected. This is likely the source of your left ventricle englargement due to the extra work load that your heart is experiencing in trying to force blood through your compromised aortic valve.

    Having said all of this, it would not surprise me if you are developing symptoms around fatigue, shortness of breath or light headedness if indeed your tests show severe aortic valve insufficiency. The symptoms can be subtle or very obvious from person to person but in my case, they came on rather slowly over a number of years. When you reach the severe classification a valve replacement becomes necessary and more urgent since you don't want additional load to develop on an already enlarged left ventricle. Even though you are a young 38 years old, this ******* knows no age limits and affects both old and young alike.

    I don't know your geographic location but I highly recommend that you look for a center of excellence heart hospital that treats large numbers of valve patients and has an excellent outcomes performance record. Yours is an atypical heart valve structure and you have some important decisions to make regarding the type of heart valve used in your replacement and the procedure for accessing the valve that the surgeon will use. The technology around valve choices and procedure types in rapidly evolving and the research and valve specialty heart programs at major centers of excellence will be able to provide you with the most experienced surgeons and the latest valves and procedure types for consideration.

    I urge you to follow the links that Katie provided in her response as well as the excellent information on hospitals and surgeons that you can review at:

    heartvalvesurgery.com

    I wish you the very best in your journey back to full heart health once you have your valve replaced. We on the site have been where you are and send you great strength and resolve as you make your decisions and work through your treatment plan. Don't hesitate to reach out if we can be of additional assistance or support.

    In Heart Health,

    AmbassadorMR

     

     

  • jcowin
    jcowin, May 11,  2020  11:04am EST

    Hi MelMcIntosh,

    I know there is so much uncertainty when you have been diagnosed with any kind of heart problem. I received a heart transplant over 20 years ago. One thing I can say is the MRI is the best way, which I have experienced, to detect any changes that come up. I have had one every year. Although they can be a little confining, I like those way better than the standard cardiac catheterizations.

    As far as knowing the feeling of fatigue when it is heart related, what I used to feel was just being more out of breath and sleeping more than I normally would. It can slowly build to that point, but when you are just tired. Everything feels tired. It is not a matter of not wanted to be active, it is a matter of just not having the energy to do what you would normally do. It doesn’t mean you can’t be active, it just means that you might be a little slower doing things or that you can’t do as much as you want to or used to. Since your left ventricle is enlarged, part of feeling that fatigue is because you might not be getting as much oxygenated blood flow to your body. The left ventricle cannot do its job as effectively or as efficiently as it would if it was not enlarged. Therefore it gets tired and cannot output normally (I was born without a left ventricle and I always has this overwhelming feeling of fatigue. I just never knew what it was or any differently). Just be aware of your body and if you have to rest, rest.

    All the best,

    Jess

     

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