Friday, April 4, 2008

Mostly dead is slightly alive.

I've started and stopped this post many times. Writing makes it seem real, and yet, it doesn't quite feel real to me.

Yesterday afternoon a packet arrived from the hospital with records I'd requested about the Little's birth and my surgery. They included the pathology report from my surgery, and there was information there that my OB did not give me.

While it is true what they told me, about tissue consistent with infection, that's not ALL they found. They also found pieces of tissue that indicated chorionic villi, suggestive of a hydatidiform mole. While this was never going to be a live baby, there was a failed conception and I'm feeling some loss over that.

I'm also feeling...angry, frustrated and betrayed that I was not given this information, and concerned as the reading I've done (as well as reading by some friends) indicates this is pretty serious stuff. AND, reading indicates that I should be followed damn closely for a while, as even after a D & C this type of tissue can come back. In some cases it can even spread like cancer or turn into cancer.

From the sounds of things, had I not pushed regarding my health, if the infection hadn't gotten me in serious trouble - this could have.

This explains so, so much. Common symptoms of this situation include a bigger than normal uterus for gestational age (check), hyperemesis (check), bleeding early in pregnancy (check), large noncancerous ovarian cyst in early pregnancy (check) and your body's attempts to end the pregnancy (check, check, omg CHECK!). No wonder none of the meds to stop contractions worked. It even explains a bit my twin wonderings early on.

It explains my first ultrasound at the OB's office where I heard "hmm...that's odd" and was then told "we don't normally see the yolk sac at this point." Probably was NOT the yolk sac.I'm guessing this was missed later on because it wasn't being looked for. Molar pregnancy seems to be reasonably rare, and molar pregnancy along with a live, healthy baby is VERY rare. It can happen, as did in our situation, but it seems that often (not always) women are pushed to terminate because of the seriousness of a molar pregnancy and chances of things like it mutating into cancer and/or pushing through the uterine wall and causing hemorraghe, and numerous other complications.

It seems we are also very lucky it stopped growing, because the growth has the potential to overtake the healthy baby when it occurs in situations like ours.

I wonder now about all the tissue I passed. The time I went to the ER thinking I was miscarrying because I was bleeding and passed a "clot"and all the tissue I passed after Little's birth when they were saying there was nothing in there.

I'm not sure how they missed this after he was born, though my first u/s for the infection they pointed to two things that they said looked like clots. They said those must have passed after I was given the methergine to make me cramp, as they didn't see them anymore, but clearly there was still some tissue in there.

Things BFF and I found indicate that when there is molar tissue, some pretty extensive follow up is supposed to happen including regular exams and beta hcgs to make sure the #'s don't go up again. That's recommended in the pathologists report.

The only mention of any of this, when I called my ob to get the results, was that a hcg test was suggested and we discussed that I'd had a hcg test right before my surgery (serum that monday when the surgery was scheduled, urine immediately before the test). the beta was negative (less than 2). That's good but something that should be followed, esp considering how much tissue I'd passed before that point.

I'm meeting with my primary dr today to discuss several things, and I'll be brining this up too. I knew prior that I needed a new GYN, a dr who is familiar with pcos and female cancers due to family history, but I now also need one who is well versed in this topic, just in case.

I really just
don't believe this.


hydrogeek said...

I don't know if you realize it, but you mentioned the little's name in this post. I thought you might want to fix that if you were staying nameless.

On the rest of this stuff, I just keep reading along, not believing the low standard of care you received. I am so sorry you had to go through this. I'm letting it server as a warning to me.

hydrogeek said...

Also, props for using the Princess Bride quote for your title. I *heart* PB.