February 18, 2013

This morning we had a pretty big doctor appointment with a new cardiologist- none other had I dreaded more. Two weeks prior, we had another echocardiogram done after seeing the new perinatalogist. She and Dr Jones (my heart rhythm cardiologist) were both concerned about some swelling and shortness of breath I was having. I had an echo done in 2008 before all my other heart problems began, and with the "plumbing" aspect of my heart, everything at that time looked fine. We met Dr. Jones, who for over the next five plus years continued to treat me for my "electrical", rhythm issues (diagnosed as Wolf Parkinson White syndrome, and later, tachycardia).

However, the new echo done two weeks prior showed something "concerning". Dr Jones called me the next night and told me that it looked like I have "Left Ventricular Hypertrophy" which is a thickening of the heart muscle walls. He said my heart shows it has a hard time relaxing, and this can be dangerous. He asked me if I had ever suddenly passed out or if anyone from my family had ever died inexplicably or from heart related issues (my maternal grandpa died at 60 of "heart problems," though an autopsy was never performed). He told me he was referring me on to Dr. Craig Walsh at the Heart Clinic, who specializes in prenatal with heart issues (who knew there were more like me?!?). He said the worst case scenario was hypertrophy-cardiomyopathy and it looks like I may need a defibrillator, as this new condition can be life threatening (my other conditions were only a "nuisance".)

So, that is who we saw on this day. And on the Wednesday before, when the boy had his "big reveal" in an unplanned ultrasound, my prenatal doctor also warned me there was a chance the new doctor would tell me it was not safe to continue the pregnancy and we may have to "terminate". Which is why Bryan and I chose not to discuss this with anyone sooner (it had not been a very good weekend leading up to this appointment). I prayed for strength for me to not fall apart at this appointment (even though I dreaded it more than anything), peace for Bryan (who has been a stressed out wreck), and protection for the baby (who, happily, we get to keep!...I felt like we went from "leasing" to "owning" this day with that little one, and I was now headed into my 14th week!).

The appointment went better than my fears, esp. for the baby's sake, but its not looking so good for me. Unfortunately, I do have the cardiomyopathy (worst case scenario), and the difference between my echo five years ago and today is alarming. It seems I have the rapid onset, though some people do not have issues until later in life. Despite some of my symptoms, he says I am looking pretty good so far and he thinks the pregnancy should go fine. After the baby comes out, we will have to discuss further testing and defibrillators, when/if it should come to that. But he says the first priority right now is to get through the pregnancy, and we will deal with the rest as it comes. I have appointments set up for every two months with both cardiologists, and I have been bumped up to every three weeks with my high risk prenatal doctor. So my social calendar is looking a little busy.

I have felt a little distant lately. Truthfully, I have been avoiding people and hiding in the house as much as possible. I wont feel out of the woods until August 26, especially with the tachycardia, which they feel will present itself more than this new diagnosis (and yes, they feel all three issues could be connected, but they don't know how). After the baby comes, it will be a whole new set of issues to deal with, but I am just looking forward to getting a healthy baby out right now.