Yesterday was Ben’s biannual cardiology visit. We left at 6:30 in the morning for our 8:00am appointment only to find out that they forgot to schedule Ben’s echo. So that meant that they had to work him into the schedule! So our long day turned to an even longer day as we sat around TCH for hours waiting for the phone call to come for an appointment. Luckily, we plan for the unexpected and long days(just not this long), so Chris had his laptop and was able to work (yeah!).
But at the end of the day this is what we heard . . .
The growth is back.
His numbers have increased.
No intervention is needed yet because the numbers aren’t bad enough . . . yet.
So in the words of Martin Luther . . . What does this mean?
The sub-aortic membrane that spontaneously grows inside Ben’s heart under his aortic valve has started growing again. The doctor doesn’t think that it is as aggressive as the last two times, but it is there. It is thin but it currently encircles the inside wall of his heart under the valve. So his heart is having to pump blood through this porous “roadblock” to make it through his body. This makes his heart work harder which causes thickening of his heart muscles. His aortic valve is still leaking and not working well. His valve reminds me of a “clunker” car. The kind you see driving down the street with black smoke coming out of the tailpipe, odd banging noises coming from the engine and the back window has been replaced with plastic and duct tape. The car is still driving, but it is certainly not working as well as 95% of the cars driving down the road. His aortic valve has only 2 of the 3 flaps working, and it has already been repaired once. So the leaking is significant enough that the back flow into his heart is coming from as far as the other side of his aortic arch.
She is also concerned about his blood pressure. Ben has chronic high blood pressure, and ironically his blood pressure is significantly higher in his right arm than in his left (like yesterday his blood pressure was 90/56 in his left and 120/43 in his right). His hypertension doctor wants us to take the pressure in his lower pressure arm. But he has been getting a lot of headaches lately. I didn’t even mention it to the doctor, but Ben did yesterday. She thinks that his headaches are being caused by high blood pressure. She said that the blood coming out of the heart branches out and goes into your right arm and up into your brain. So the echo yesterday showed that the flow coming out of the heart is strong (which explains the difference between the left and right arm) and this blood is going into his brain. So his blood pressure may be overall low, but the pressure into his brain is high causing headaches. So there is no change in the medication. But now we have to watch his headaches and take his blood pressure in both his right and left arm and mark the difference. Geez. I have a hard enough time finding a moment to take one pressure. Now two?
So that is the report from yesterday. Not what we wanted. Not horrible. But not stellar. I was just really stunned that the growth had come back. It just adds one more dimension to this already complex puzzle. None of the numbers are by themselves bad, but together they add up to unpleasant report. We go back in six months. She said that she doesn’t think we will have a horrible year like 2009. She doesn’t think the membrane will grow that fast, but that is not what happened the last time. But we will just wait and see. It is ok to be sad today, but there is nothing I can do about any of this but love Ben and pray. It does no good to worry. So we will just live within the rules that we have been given for this game called “life”. We knew that another surgery was coming, but I think I had hoped for a little longer (like when he was 20). And I didn’t expect his membrane to grow back (even though the surgeon said it probably would.)
I am pretty good about compartmentalizing my life. I don’t worry about Ben until it is time to worry about Ben. We absorb the changes in lifestyle, the numerous doctor visits, the medication, and the daily pressure checks into our lives and now it all routine. Don’t get me wrong. I am worrying about Ben, but there is worry and then there is WORRY. The big-picture-long-term-life kind of worry. I just can’t do that. We just live six months at a time. So right now life is good. Ben is a riot and still charms everyone he runs into. Ainsley is still our tiny princess, and Madie is still our young scholar. Those are the worries that I choose to be concerned with . . . at least until our next visit with the cardiologist.
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