Prayers

snickersforeveryone

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.

snickersforeveryone

Thanks everyone. His mom had something with her heart where the artery was being squeezed off by the heart muscle, but apparently that's different. This is the first anyone knows of DH's problem appearing in the family.

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.

snickersforeveryone

PaddyB said:

I am so sorry. Hopefully the defib is never activated.  Did they say anything about a combo device that would help maintain function in addition to shocking the heart if something goes wrong?

She did mention that there are different types of devices, but wanted to wait and have us discuss those with the doctor who would actually do the procedure. So far we know nothing about how it works other than it would shock his heart if there is a problem.

aylafsu88

That sounds stressful and scary. I am sending lots of psitive T&P your way.

versed

Lots of T&P for you and your family!

ashleynaka

Sorry to hear this. T&Ps coming your way along with lots of positive thoughts that all goes very well and the kids missed that gene. Please keep us posted. I know how scary this is as heart problems run in the family. Take care.

pinkangelmoon

Oh how scary! T&Ps sent your way.

snickersforeveryone

Thanks for all the well wishes. I'll update as we find out more. We got even more bad news today of a different kind, so please just bear with me. I might not be able to be online as much to support you all over the next few weeks, but I'll check in when I can.

snickersforeveryone

@summergirl1211‌ I just realized I didn't answer your question. His MRI is on Nov 4, so we should know in the next few days after that when he can have the defibrillator placed.

sarahandeddiejune212008

That's terrifying. Prayers your DH is okay and your kids don't have the same issue.

lkamenko

How scary! Sending your family lots of T&P. Hope kids don't carry the disease and your h can keep it in control. Hugs, girl, you and your h have been through so much!

renee32321

Sending prayers your way!