What Really WAS My Heart Condition? Answers Here.

I know this is kind of a random post, but it is something I have been thinking about for a LONG time, only because I am asked this question so often. (Sorry, this post has nothing to do with Florida – I’m having trouble downloading pics, so I’ll just hold off on that right now.) Many ask if we have kids and of course we say no, but after that no, always comes kind of a puzzled look. I hesitate to say something after the no – do I just leave it? Do I explain why we don’t? It’s just kind of awkward to be quite honest at times. But to me, it’s the common question to ask at our age, which I totally understand.

What most people don’t understand is why we are in the position we are in today, with kids. I try to explain to people what my first heart problem was and it’s hard to understand! I know I have talked about it before, but I want to go into a little more detail on what my initial heart condition was. What I am about to say is sometimes hard to type only because I could’ve been a “statistic,” but I am alive TODAY. God has me here for a purpose TODAY! And in typing all this, it just makes me more and more humble everytime I tell it!

I will spare the story on how they found the heart condition (only because I have spoken of it in previous posts), but I want to talk more about what an anomalous left coronary is. Over the years I have done more and more research on what it all entails and I surely have learned a lot and realized truly how blessed I am. All the research I have done is from John Hopkins University, University of Michigan – pediatric cardiology, and an article from a heart surgeon (I forget what hospital).

First of all, an anomalous left coronary is a rare but serious heart condition. The left coronary artery (which is supposed to carry the blood to the heart muscle) is connected to the pulmonary artery. Why is that a problem you may ask? Well, the pulmonary artery carries low-oxygenated blood from the heart to the lungs. In the case of an anomalous left coronary, the coronary artery receives blood from the pulmonary artery instead of the aorta – so the blood is low in oxygen. This also causes backflow into the pulmonary artery from the coronary. As a result, the heart muscle doesn’t get the right amount or right kind of blood. Basically, if the heart doesn’t get the right amount of oxygenated blood, the heart begins to die. It sounds like a flow chart, and really it is, but it’s amazing how God choreographed the heart!

What is the percentage of people who have this problem? Well, about 2 years ago, research said that about .25-.5% (yes, I did type that correctly) of all congenital heart disease patients had this problem. So not just .25-.5% of the general population – it’s the percentage of those with congenital heart disease. So it is a very rare condition. What is even MORE mind-boggling is that the mortality rate for a baby with this problem in the FIRST year of life is 90%! In most cases, 85% ( of those with ALC) see signs in the first 1-2 months of life, so hopefully it is caught in time. So either you are in the 85% in catching it, or if you don’t catch it, you drop to the 90% mortality rate. Doesn’t that just blow you away? I often have to just sit here and read that over and over. It is in reading that, that actually EXCITES me because that is TRULY GOD AT WORK!!!!! It is only by GOD’S GRACE that he spared me – statistically it OBVIOUSLY does NOT make sense for me to be here today, but God knew it all along.

I will remind you that they found this problem when I was 17. Yes, 17.

Many also ask what symptoms I had? I had NONE to my knowledge at that point when they found it. Looking back today, yeah I guess there were things that maybe weren’t “normal” like being more tired, getting easily tired running for basketball, but other than that, nothing. And back then, I was 6’1″ (and still am today), so being a taller girl, of course I would tirer quicker! What symptoms should there have been? pale skin, poor feeding, rapid breathing, sweating, symptoms of pain or distress – all as a baby. Yeah I threw up my milk when I was a kid, but docs never saw anything related to my heart – I grew out of it anyway. Plus, a lot of babies throw up their milk – so in no way would I EVER blame a doctor for not catching this! I just plainly did not present the symptoms I should have, with this heart condition. It is said that nearly 10-15% of patients with this issue (that is of those who lived), don’t have serious symptoms until their teen or adult years. Unfortunately, when you make it that long, most don’t survive. They find the issue during an autopsy. Crazy huh? Chalk that one up to God once again!
So how can you treat an anomalous left coronary? The only way is through surgery. Usually only one surgery is required (to detach the coronary artery from the pulmonary and hook it onto the aorta). In some cases, a second surgery is necessary to repair/replace the mitral valve (this is where my current heart condition falls into play). Normally the mitral valve function would improve after surgery, but for me, it has increasingly gotten worse over the years. I thankfully did NOT need a heart transplant, which can be the case too, if the heart was severely damaged from the lack of oxygen. My heart muscle was DEFINITELY damaged, but they could just fix it, instead of doing a transplant, which is another thing to praise God for! It also helped that I had just come off of a basketball season, so I was SUPER in shape – which is a great position to be in, in preparation for open heart surgery!

So in general, after having this heart condition (though it was fixed), what are the concerns now? First of all, exercise. Before my surgery (it was a month in between finding out I had a condition and the actual surgery b/c first they didn’t know what it was, then figure out what to do, then to find a surgeon/hospital to get it done at), I was unable to do ANY type of physical exercise. I literally had to be a couch potatoe – only because they didn’t know if I would survive. I am not supposed to lift over 20 lbs (though I do) and not be involved in any organized sports. I have to be aware of my exercise tolerance and say stop when I need to – that’s the hard part. I know myself, but I like to push myself too! Second, pregnancy. Because I have mitral valve regurgitation (that’s a whole other post someday), and the increase in blood volume to the heart during a pregnancy is significant, it will hinder me immensely at this point. I have talked about the risks in other posts, so I won’t go into detail, but that is the main issue right now.

So why me? Only God knows. It is not inherited. There isn’t anything that my parents did. It is purely the result of my blood vessels not connecting in the right way when my heart was developing while in the womb. To me, that honestly gives me comfort because NOBODY could have done ANYTHING to prevent it. My hurts for my parents who had to go through that all with me, but they were so amazing – I can’t even put into words how appreciative I am of their care and love during that whole ordeal (and even to this day). I can’t IMAGINE what it would be like as a parent to be told what they were told. Ah, it just breaks my heart just thinking about it. But, through and by faith, we ALL knew God was in control!

I hope all of this makes sense. It can all get a little wordy, but I hope it gives clarification! I try to explain the best I can when people ask “now exactly what was wrong again?” Don’t feel bad asking only because it IS a confusing issue. Confusing I think because it doesn’t seem POSSIBLE that someone can live 17 years with a heart that is receiving poor-oxygenated blood. 17 years when most babies die within the first year of life. So, if you have questions, please just ask! In all seriousness, I don’t mind talking about it because it shows God’s mighty hand. It shows His provision. It shows His majesty.