Long version: A friend asked me if yesterday's cardiology appointment was "just routine?" and I responded "yes, routine bad news every month".
That has definitely been the case these past eight months, and really, it's to be expected since Job's in heart failure and listed for heart transplant. I guess I just didn't expect the decline to be so very noticeable, week after week. I thought we'd have a longer trajectory.
I keep reminding myself of how sick he can get still and how many interventions are available still, but I'm just so sad and so weary after this last appointment.
The heart has four chambers and therefore four valves. The tricuspid valve is supposed to allow blood to flow from the right atrium to the right ventricle but not let that blood "leak" back into the atrium.
Job's tricuspid valve does indeed leak blood back to the atrium which causes two significant problems: his atrium is filling up with blood and essentially getting stretched out and he's not sending as much blood along to his body to use as he should.
This first became a problem after Job's first surgery, when his circulation was first reconfigured, because the right ventricle is so stressed from over work. If you remember, Job's left ventricle was the size of a sesame seed and not at all functional, which is why his right ventricle had to take over the job of pumping blood to the body.
The right ventricle is smaller and less powerful than the left ventricle, as it is only supposed to pump blood to the lungs as opposed to the whole body like the left ventricle. Think lawn motor engine vs cadilac engine.
We always expected Job would need a tricuspid valve replacement, until we realized his other issues necessitated a transplant instead of the other HLHS interventions.
We have been carefully monitoring Job's tricuspid valve "leakage" (regurgitation). It was increasing (to "moderate") but then stabilized about 6 months ago and actually seemed to be improving (to "mild").
But since his last echo three months ago, his tricuspid valve regurge is suddenly very severe.
This could be because his heart is failing and failing quickly and this is just one expression of this failure.
But it could be because of narrowing in his aorta which would need surgical intervention. His aorta has been patched and enlarged twice in open heart surgery and has had two cath interventions but the flow is fine at these intervention sites (where we would expect scar tissue to create narrowing).
The team debated about sending Job to the cath lab where they could assess his heart, figure out why the tricuspid valve is suddenly so leaky, figure out if there is narrowing somewhere else, and then potentially intervene. But they decided the risks of an exploratory surgical procedure and anesthesia are too high for him right now. Job is too fragile around with unless it's an emergency.
So we'll be doing a CT angiogram which I know nothing about yet but will be learning about soon.
Job is still on the transplant list and this new finding hasn't "hurt" or "helped" his status. But we need to optimize his health so that he can wait however long for a transplant match to come up.
His huffing and puffing and increased cyanosis (blueness) are likely because of this regurge and they will probably continue to get worse.
We also did an oxygen trial but I'll write about that later because this post is already so long.
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