Friday, April 25, 2014

The Rest of the Story: GTD

We don't get cell phone service at the cabin.  So last Friday when we drove into Tahoe and my phone chimed with a voice mail, I naturally listened to the message.  It was my surgeon and she wanted to talk about the pathology results from my surgery.

Ugh.  That couldn't be good, right? But maybe it was routine, just a courtesy call.

I dialed the number and spoke with a nurse first.  It didn't reassure me much when she said, "Oh, there's a note here that I'm supposed to page Dr. Korinke when you call.  Hold please."


When she finally got on the phone Dr. Korinke did indeed have some surprising news.  The tissue removed showed a partial hydatidiform mole, commonly called a partial molar pregnancy.

A molar pregnancy is where the embryo either develops incompletely, or doesn’t develop at all. Instead, a cluster of grape-like cysts grows in the uterus.  In my case, part of that embryo had developed a bit, because the ultrasound showed a heartbeat at eight weeks.

The whole thing is a bit of a genetic accident that occurs at fertilization and is very rare.

I wish that was the end of the story.

For now, I have a condition called gestational trophoblastic disease (GTD).  Molar tissue can be quite stubborn and want to stick around for a while.  The hope is that when I had surgery all of that annoying tissue was removed.  If not, there are significant, but rare, risks to my health.  I'm not going to dwell on that part, but it's something to be taken very seriously.

The immediate future involves regular blood tests to make sure my hCG (pregnancy level) is dropping.  Once the level is in a normal range, it needs to be consistent and stay that way.  Continued blood tests after that time will ensure that any 'hidden' tissue doesn't become active again. Hopefully in the next six to twelve months we'll get the 'all clear' that GTD is in the past.
Another key component to having a successful outcome is not getting pregnant. The miscarriage alone altered our plans, but this diagnosis sure changed things.  Talk about a major shift in thinking.  We spent the last few months talking about getting pregnant and having a baby.  Now my medical issue requires being focused on making sure that we don't.

In a way it's kind of nice to not have to make any decisions about if and when to have another baby.  We've got LOTS of time to figure that out.

And there are definitely some positives: It's awesome to be feeling better again.  I love being able to give my best to my awesome, sweet boys and amazing husband. That first trimester is the worst.  I've experienced the first trimester five times, and we are definitely not friends.

I believed the doctors when they said the miscarriage wasn't my fault, but you always wonder.  Turns out this REALLY wasn't my fault.  I wasn't even pregnant with a baby (which sounds terribly weird).  There is nothing I could have done to prevent this.

I am positive, optimistic, and so blessed to have access to good medical care.  This is just my hard thing right now.  Thanks to prayer and perspective it doesn't even feel that hard.  It's simply a direction our family is going that was unexpected. 

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