Friday, November 5, 2010

More information

I got off the phone with Magnus's cardiologist a little while ago.

He's basically got three problems:
-Collateral veins between his aorta and pulmonary artery
-A slight narrowing of his left pulmonary artery
-Also, collateral veins somewhere else that I did not write down the location of

Today they're going to coil off some, but not all, of his collateral veins. They can't coil them all, because right now he's depending on them for his circulation and if they got them all he'd have very low sats. But they want to get them all eventually, so we're going to be back in the cath lab again in 6 weeks or so.

In addition to this, he's going to need to be on viagra 3 times a day to lower his blood pressure.

They may or may not put a stent in his pulmonary artery to address the narrowing. If they don't do it today, his cardiologist says he will "probably" require it eventually. The downsides of putting the stent in are one, that it won't grow with him, and will eventually need to be removed, which is difficult; and two, that if he has a stent in he'll need to be on an additional anticoagulant drug, Plavix, as well as another drug to counteract the effects of Plavix on the stomach (just when he finally seemed to be growing out of his reflux issues, sigh).

Anyway, the additional medications are an inconvenience and all, but the news of today has potentially grave implications. As his cardiologist put it, "this is big." She said she's had patients who have had these complications before and who have done fine, but it is far from assured that these fixes will work. I didn't think to ask her what the time frame is for knowing if he's getting better, or if there even is one. Well, we've lived with plenty of uncertainty before, and now we just have a little more.

I asked her if this would affect his eligibility for the Fontan (his third staged surgery). She said that if the drugs and coils work, no, but if they don't, yes.

For now, they're going to do what they can do today, and we'll be in the hospital at least overnight because he'll be getting viagra and they need to see if he'll tolerate it.

1 comment:

  1. I'm thankful that you have a diagnosis to work with, but sorry that it isn't something that's easier and simpler to address. Damn. Magnus is an overacheiving rockstar, though (and so are his parents), so I continue to have very high hopes.

    Lots of love and good thoughts to you all.