My 4 week AFP nightmare is finally over!

It has been the longest few weeks of my life, but finally have good news. I posted a few weeks ago; i had had extremely high numbers on my first AFP (31 times the mean!), so I had to have an emergency u/s, then another one the next day as they couldn't see anything, just to confirm the babies' spines were fine. Fortunately, they were, but the next AFP was also off-the-charts high (although significantly lower).

My doctor's couldn't figure it out, but the options they presented were all awful: either a liver or ovarian tumor for me, or testicular or ovarian cancers for the babies (we don't know their genders), OR a horrible incurable kidney disease or a horrible skin disease for the babies, both of which would have been fatal after terrible, pain-filled short lives.

You can imagine that I was a mess (plus going to the doctor all the time, finding a peri, having endless vials of blood drawn....all with Thanksgiving and a trip to the in-laws coming up, and DH getting ready to leave the country for three weeks....)

The AFP numbers kept coming down, but they were still high, and they couldn't figure it out because if it was coming from the babies it should be going up. The next step was possibly an amnio, which we REALLY wanted to avoid....

Well, finally, the doctor who did our screening work and nuchal transparency was talking to my OB, poring over my chart, and the OB mentioned that i had had hyperemesis, so the geneticist asked what she had given me.

Turns out that both Zofran and Phenergin (sp?) AND Tylenol (which i was taking to alleviate my sinus infection symptoms, since i had vomited up all my antibiotics), are all liver toxins, and since I had had hepatitis as a young adult when I got mono, my liver was likely sensitive to it. There is also a family history of a liver syndrome called Gilbert's, which means your bili rubin runs high.

So I had to have another ultrasound to look at my liver and ovaries and everything (which was ok, because i got to see the babies again, which is always fun!)

At that point, the geneticist also looked at the numbers from the lab and noticed that they hadn't done the proper calculations to account for the twins - even though she had asked, I had asked, even my sister the radiologist who lives across the country had asked! Not taht it would have made a difference, since the numbers were still too high, but....

Well, I just heard that my last (FIFTH!!) AFP was perfectly normal. I had pretty much figured the babies were alright, but hearing the 'official' word is a huge relief.

I have to say, while I had some pretty dark moments, I was mostly able to keep myself from walking that path - but when i did go there it was AWFUL and terrifying.

So - if any of you have weird AFP's, remember that not only are they notoriously unreliable, as I've read from lots of posters, but - if you have any liver issues, that might impact the reading.

As I said to my OB, now I can relax: I'm 19 weeks today, I spent 16 constantly puking (which seems to have stopped, HOORAY!!!), so i can enjoy it before I get too big and it's impossible to move!
Now all I need is for my DH to come home from India (only ten more days!)

 

It has been the longest few weeks of my life, but finally have good news. I posted a few weeks ago; i had had extremely high numbers on my first AFP (31 times the mean!), so I had to have an emergency u/s, then another one the next day as they couldn't see anything, just to confirm the babies' spines were fine. Fortunately, they were, but the next AFP was also off-the-charts high (although significantly lower).

My doctor's couldn't figure it out, but the options they presented were all awful: either a liver or ovarian tumor for me, or testicular or ovarian cancers for the babies (we don't know their genders), OR a horrible incurable kidney disease or a horrible skin disease for the babies, both of which would have been fatal after terrible, pain-filled short lives.

You can imagine that I was a mess (plus going to the doctor all the time, finding a peri, having endless vials of blood drawn....all with Thanksgiving and a trip to the in-laws coming up, and DH getting ready to leave the country for three weeks....)

The AFP numbers kept coming down, but they were still high, and they couldn't figure it out because if it was coming from the babies it should be going up. The next step was possibly an amnio, which we REALLY wanted to avoid....

Well, finally, the doctor who did our screening work and nuchal transparency was talking to my OB, poring over my chart, and the OB mentioned that i had had hyperemesis, so the geneticist asked what she had given me.

Turns out that both Zofran and Phenergin (sp?) AND Tylenol (which i was taking to alleviate my sinus infection symptoms, since i had vomited up all my antibiotics), are all liver toxins, and since I had had hepatitis as a young adult when I got mono, my liver was likely sensitive to it. There is also a family history of a liver syndrome called Gilbert's, which means your bili rubin runs high.

So I had to have another ultrasound to look at my liver and ovaries and everything (which was ok, because i got to see the babies again, which is always fun!)

At that point, the geneticist also looked at the numbers from the lab and noticed that they hadn't done the proper calculations to account for the twins - even though she had asked, I had asked, even my sister the radiologist who lives across the country had asked! Not taht it would have made a difference, since the numbers were still too high, but....

Well, I just heard that my last (FIFTH!!) AFP was perfectly normal. I had pretty much figured the babies were alright, but hearing the 'official' word is a huge relief.

I have to say, while I had some pretty dark moments, I was mostly able to keep myself from walking that path - but when i did go there it was AWFUL and terrifying.

So - if any of you have weird AFP's, remember that not only are they notoriously unreliable, as I've read from lots of posters, but - if you have any liver issues, that might impact the reading.

As I said to my OB, now I can relax: I'm 19 weeks today, I spent 16 constantly puking (which seems to have stopped, HOORAY!!!), so i can enjoy it before I get too big and it's impossible to move!
Now all I need is for my DH to come home from India (only ten more days!)

 

Congratulations - that must be such a relief for you.!! I remember when you first posted thinking, I wonder if they factored in twins. Can't believe they actually didn't!!

Now sit back and relax and try to enjoy the rest of your pregnancy!!!

 

Big sigh of relief. You must be both excited and exhausted!!!!
So happy that all is well.


Hugs,
Beth

 

That's great news! I'm so happy for you that everything turned out ok.

 

Yikes....what an ordeal, and a whole month! I'm really happy for you and also glad the vomiting seems to have ended. I hope you can now relax and enjoy the rest of your pregnancy.

 

Bless your heart! what a relief to have figured that one out!!!
CONGRATULATIONS on no more morning sickness also!!!! Now you can
enjoy your pregnancy!!

 

Yay! I'm so glad everything is fine, and I'm sure you are sooooooo relieved and most likely have a "perma-grin" on!

 

Wow - what a story! I'm so glad to hear that the AFP is down to normal...and I can't belive they didn't account for the fact that you were having twins in the beginning. But, as you said, all is well now and that's what matters! And congrats on not being sick anymore! Enjoy yourself these next several weeks!

 

(water of course)!! Glad to hear the whole ordeal is over. Do you have a big countdown going, life size calendar on the wall counting down the days?

 

Wow, what a nightmare of worry you have been through. Glad that it is all over and that the babies are fine. Now you can try to enjoy your pregnancy.

 

Hooray, now you can sit back and enjoy the rest of the pregnancy. You must be so relieved.

 

It never ceases to amaze me how docs/labs can get things so wrong. What kind of things must have been going through your head and heart, you poor thing. Thank Goodness it's all wrong and now you can focus on your pregnancy going all right from here out.

 

What a relief!!!!!!! I'm so glad everything seems to be working out for you and the babies ... kind of makes you want to punch someone for weeks of needless worrying though, right???

 

Yay! I'm glad everything worked out and you can put this mess behind you!

 

Thanks for all the kind words. Yes I AM glad to put it behind me - I even spoke to DH in India last night and told him; he was so relieved.

Of course, I'd feel even BETTER if my vomiting had not returned w/ a vengeance today!

 

Sorry to hear about your MS, but I'm sure in comparison to the mental strain you've been put through, you'll get by ok!!
I remember when you posted a few weeks ago; I just can't imagine what a nightmare this must have been.
Glad to hear things have come back to normal. You deserve an easy, fast and problem-free pregnancy from here on out!