The Heart wants what it wants

We had our follow up with the cardiologist. Alyssa has two heart conditions that are being followed. I guess we have gotten a little spoiled with these follow up visits lately. We get our tests, blood work, etc. done. Then we wait for whichever specialist we are seeing that particular day. He or she comes in and says that everything is looking good, see you in 3 mos, 6 mos, 1 year… whatever the case may be for that issue. Sometimes I even cram my brain thinking of a really groundbreaking question where the doctor will be forced to give me some secret information that he didn’t mention before. I’m a bit crazy that way, I know.

So I was unprepared for this cardiology visit. One of Alyssa’s issue is still remaining on the “let’s watch” list. So continue with check ups until something changes there. But her bicuspid aortic valve has gotten worse. My heart dropped a bit when he told me this. I know he told us that it would most likely need surgery to correct it… eventually. I wasn’t prepared for him to tell me surgery would need to happen within the next two years. Heart surgery within two years? She’s only 11. Believe me, I am quite aware than many other children even babies have had heart surgery and my child is certainly not unique in that aspect. But this is my blog and my vent and I was not prepared for this.

He said we still have time to think about it and discuss our options and the best thing for her. Her valve would need to be replaced as repairing the valve has not yet proven in long term success in cases like hers. There are three options for valves and I went into a bit of a brain spin as he explained, but got bits of information on each. We will of course scour over each option before making any decision. But the basics are, 1) proven not good long term so would have to be replaced again at some point, 2) long term good, but she would have to go on blood thinners for life and that brings up many other issues, 3) good option long term, no blood thinners, but still in trial phase with adults. There is also a medicine that may or may not slow down the deterioration that could buy us some more time, but have to look at side effects vs possibility that it will work.

For now we are going to track her blood pressure for three months and then meet again to decide if we want to try the meds or not. So more on this topic in three months!!

2 Comments  to  The Heart wants what it wants

  1. Cathy says:

    Our prayers are with you all ! I am so sorry to hear this news. Our hearts are with you.we love you!

  2. Emily says:

    You are so brave Alyssa. I will always be praying for you. I can’t wait to see you again! Love you!!!!!!!!!

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