My Heart Defect Story


I grew up not even aware that I had a heart defect. In 2009, at the age of 41, I began having extreme fatigue. It was to the point that when I was awake, I was cloudy and foggy and could never feel fully awake. I could not go up a flight of stairs, without being not able to breathe. I could not even raise my voice to yell at my teenager without feeling like I couldn't breathe.

    I complained and complained to my Dr. about all the symptom's I was having and basically, they told me, you work third shift, that is why you are tired, you smoke, that is why you can not breathe. I knew something was wrong with me and I knew it was not those reasons. I had thyroid issues in the past and so I was finally able to convince my Dr. to send me to a thyroid specialist because I thought maybe it was hypothyroid kicking in. It was at that appointment that finally that Dr. heard an abnormal heart beat and sent me for an echocardiogram, first I ever had my entire life. Low and behold, I had 2 holes in my heart and my mitral and tricuspid valve had not formed correctly. I had these issue's from birth but they had never been picked up on. My actual diagnosis was called AVSD with a cleft mitral valve. These finding's came about in Oct 2009 and on Nov 3, 2009, I had open heart surgery. Had they of not found this, I would not be here today, it had got to that point. I had to have my surgery at a children's hospital because it was a birth defect. My surgeon told me that this is not an uncommon defect to find after it is too late or into adulthood. Because of all the years, though, that my heart overworked itself, I have other valves that are leaky (as they say) and lung damage. I am only 43. I follow up with a congenital heart specialist routinely, that is 2 hrs away due to the fact that these type of Dr's are rare for adults.

I am adamant about listening to your OWN body and you must ADVOCATE for yourself. If you feel something is wrong keep pushing til you get the answer. I am so glad I did. Even though I have more heart issue's now, I was given those extra years with my girls and granddaughter.

   Looking back into childhood, I can see where I had some of the symptoms as in, frequent respiratory infections and inability to keep up with the other children (I thought I was just not an athletic kid!) now that these issue's have come to the forefront. It is so important to pay attention to the signs your body gives you. Medicine has come a long way since I was a child but we still are seeing adults, teens and babies dying because of undetected heart defects.

  This is the anatomy of a heart with AVSD and cleft mitral valve like I was diagnosed with.
AVSD is only 1 of many types of defects.

There you have it! My story! As it continues and more develops with me,
I am sure I will be posting on my blog. 

My Open Heart Scar That I Wear Proudly!