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July 2012 Moms
snickersforeveryone
member
Prayers
snickersforeveryone
member
So we got some bad news. DH has a genetic condition that causes the walls of his heart to thicken. It was in the apex of his heart and the walls there were about 1.6 cm thick (1 is normal). He has been on medication for it for 6 months.
At his doctor's appointment, we found out that the thickening has spread all over and is no longer confined to the apex. In addition to that, the walls are now measuring 2.8 to 3 cm thick. This is dangerous because it can cause rythym problems that could make him pass out or even take his life.
They are sending him for a cardiac MRI and then he will have to get a defibrillator. The prognosis with the defibrillator is quite good, as once the walls get to a certain thickness, they can't grow any more.
We also have to have him and the kids genetically tested. Certain...strains?....of this genetic issue are dominant. We need to know if the kids have this so that we can catch any problems early, though any issues probably won't arise until their 20s.
Please, send him and the kids prayers, good juju, and good thoughts. Until the defibrillator is placed, he's at high risk. We are pretty scared. Thanks.
At his doctor's appointment, we found out that the thickening has spread all over and is no longer confined to the apex. In addition to that, the walls are now measuring 2.8 to 3 cm thick. This is dangerous because it can cause rythym problems that could make him pass out or even take his life.
They are sending him for a cardiac MRI and then he will have to get a defibrillator. The prognosis with the defibrillator is quite good, as once the walls get to a certain thickness, they can't grow any more.
We also have to have him and the kids genetically tested. Certain...strains?....of this genetic issue are dominant. We need to know if the kids have this so that we can catch any problems early, though any issues probably won't arise until their 20s.
Please, send him and the kids prayers, good juju, and good thoughts. Until the defibrillator is placed, he's at high risk. We are pretty scared. Thanks.
This discussion has been closed.
Re: Prayers
If the heart wasn't thickening all over, and was just getting thicker at the top, they could surgically thin it, but because it's all over that isn't an option. The medication should have slowed it down but didn't. They've doubled his dose while we wait for the MRI and the results. He also can't do anything where he would have to exert himself too much.
It's just really scary because we went apple picking last weekend and he pushed the stroller with both kids and our stuff in it up the hill. When he got to the top and was resting he started having bad chest pains. Now we find out that it could have killed him. I know it's over and done but for some reason it just makes me want to cry and freak out.