Heart update

I had a cardiac MRI just before I left Australia which is supposed to be the most comprehensive heart scan that can be done, showing the most detail.

I finally got the report from it back a little under 2 weeks ago now I guess, and from the way it reads, it looks more likely that I may have the same thing that killed my dad and aunt. I haven't seen a cardiologist yet over here as you need health insurance, which we can't get until Andrew's social security number comes through (that's a whole other drama..). So I haven't had it all properly analysed, but if nothing's wrong when one of these things, the final report bit says "Nothing noted" or something along those lines.

This report basically said parts of my heart were enlarged. This had me worried so I rang my cardiologist back in Australia, who said it was nothing to worry about and I was in no danger. I don't believe he actually had the report at that time though. The initial scans done said that at the sinuses of valsalva, the measurement was 39mm which was at the upper limits of normal. The latest report says that same measurement is 41mm. I know 2mm doesn't sound like much, and there is a slight margin for error but it means either 2 things. Either the first test which isn't as accurate was a bit out and the measurement was actually a bit bigger than reported, or it has gotten a bit bigger since the first scan. And if it has grown 2mm in size in 6 months then that is a bit worrying I think.

Anyway, so at the University of Texas, through research they've been doing, they've identified a gene that causes aortic aneurysms and dissections. I contacted then a little while ago, and they said I was welcome to be part of the trial if I wished. So I contacted them again a couple of days ago and said I was now in the US, I am interesting in being part of the trial, and attached the report from the cardiac MRI they could get an idea of my situation, and decide for themselves if they thought it was nothing.

Her response was "This increase in your aortic size suggests that you may be a carrier for the same gene which predisposed your father and aunt to aortic aneurysm/dissections."

So now I'm not sure what to think. She's an expert in aortic aneurysms, and my cardiologist has never said that the heart measurements are still in the normal range, he's always answered my question asking if that's "normal" in saying that I'm in no danger at the moment, but to keep taking my pills and not to do any strenuous exercise. For the moment though, she's sending me a saliva collection kit, so I can send some saliva which they can do DNA testing on, and see if I have this same gene that they've already identified as being a cause. It's unlikely that they'll be the same apparently, but that's what research is all about - lots of testing! I won't take the researchers comment as the final word though give that she does not have my full history.

I certainly do believe I'm in no immediate danger of having a heart problem as such, and it has to grow a fair bit more to be in the category of needing surgery, but my fear is more that it's looking more and more likely that it's going to turn into an aneurysm, and not being able to do anything about it. Once it is at the size that it is considered an aneurysm, there's still nothing you can do until it reaches an operable size which frustrates the hell out of me. I don't like the thought of just sitting back and monitoring it until it reaches this magical size, and not being able to do any sort of strenuous activity because it might cause it to dissect split.

For the moment though, it just means a lot more monitoring to figure out if it is growing in size, or if it's just big for some strange reason.