/ The RE's Muse: And now the panic is real...

The RE's Muse

After 4 years of infertility, 2 surgeries, 1 miscarriage, and 19 months of high risk pregnancies, hubby and I now have two little women in our lives--one a toddler, the other not far behind. Buckle your seatbelts, it's gonna be a wild ride.

Thursday, January 27, 2005

And now the panic is real...

I just got a call from one of the doctors at my OB practice (one who I haven't yet met). It seems that my integrated serum screen test has come back in the abnormal range. Yes, I'm aware of the false-positive capability of this test (though supposedly not as high a false-positive rate as the standard triple screen test) but my terror level has now racheted up to unbearable.

The doctor said the first thing they need to do is confirm my dates with ultrasound. I reminded him that I have the level 2 ultrasound on Monday so he's going to fax my results to the peri's office and also let the genetic counselor there know as well. The doctor was kind enough to tell me that a lot of times it turns out to be nothing but they need to be certain of dates, etc., before knowing what the next step may be.

I'd read (on another blog, can't remember whose right now) that several factors can cause an abnormal result--particularly if you have factors that are not in keeping with "normal" pregnant women (those without PCOS, not on any meds, not heavy, etc.). I don't have PCOS, but I am insulin resistant, and while not heavy per se, I'm definitely of 'hearty' stock, and I'm on two medications that may play a part (metformin and dexamethasone). Do those factors play a part? I don't know. But I do know that I'm so very scared.

I'm at work, but I can't stop crying, can't stop worrying that something has gone so wrong. I'm terrified at the thought of doing amnio, at the risk of loss from it when it's 1 in 250 (per the rate quoted me by the genetic counselor), and at the risk of not knowing if something is horribly horribly wrong with himorshe, something my own fucked up genetics may have caused.

How can I get through the days until Monday? Until I have to make the decision on what to do next? I just don't know--so many things--and that is the worst part.

(UPDATED TO ADD: The peri office called me to reschedule my Monday appt--they now want me to see the genetic counselor at 8:30 in the morning and changed my ultrasound from 4 p.m. to 1 p.m. When I just called back to confirm and see if we could move the appts up to tomorrow so I could reclaim some semblance of normalcy to my heart and mind, I was told that both perinatalogists don't work on Fridays--and also that my 1 p.m. appt for Monday is not for an ultrasound, it's for amnio. I explained to the receptionist that the girl who called me never said the words "amniocentesis" when she called to reschedule me; instead she led me to believe that I'd just be having the ultrasound, 3 hours earlier than previously scheduled. Now I wait for her to call me back to clarify--especially since A has a 2 p.m. appt on Monday that he can't reschedule--and there's no way I can even begin to contemplate doing amnio--if that's what this comes to--without him with me. Turns out the visit is for either a Level 2 or an amnio, depending on what we decide to do.--ALSO, test results show that I have a 1 in 5 risk for baby with trisomy 18--the age related risk for this in my age group is 1 in 970. My brief google research found that 90% of babies with trisomy 18 don't live past age 1, 20-30% die in their first month. What to do, what to do....)

19 Comments:

At 12:46 PM, Blogger Pazel said...

Big hugs to you. Now I'm going to give you my non-medically trained opinion. Yes, there's a lot of false positives with the blood test. Usually what comes out is that they change the odds, say from 1/700 to 1/300 or such if they results higher than usual, so it doesn't definitively say anything just higher odds than usual. If he didn't give you these, ask for them, your odds based strictly on your age and those from the blood test. During the Level II, they will look for various markers depending on what your results were high in (say downs versus spina bifida). For Down's, they measure neck thickness (fold at the back) and several other things. Again, it's not conclusive, only an amnio is.

I had an amnio and obviously I didn't have a miscarriage. I did it to get information on the baby's health. Not to say that I would have terminated if anything was wrong, but that I wanted to know so I could make that decision and if there was and I decided to keep the baby I could read and join support groups, etc. My friend found out her daughter had Down's in the recovery room after delivery, and I didn't want that to happen to me.

The amnio was scary because of the odds of miscarriage, but in all actuality, it was over quickly and only hurt like a pinch. There are worse pains I've been through to get pregnant, you know what I mean. I asked for the FISH results which meant getting some results in 24 hours instead of 2 weeks.

I don't know if you can avoid the panic feeling because I'd be feeling the same thing too. However, saying this and knowing this, you're powerless until Monday. If I were you, I'd try to see if there's anyway they could get you in tomorrow (beg, cry, whatever it takes). Absent that, then make some sort of plans for the weekend to try to get away from it because there is nothing that you can do. It will still be on your mind, but maybe a drive far away, looking at new scenery will make it easier to bear.

My love to you. If you want to know more about amnio, just ask.

 
At 1:01 PM, Blogger E. said...

Oh, Dee. I'm so sorry you're going through this. I'm hoping hard that it's nothing, and that your meds are throwing off the results. Thinking of you.

 
At 1:02 PM, Blogger Jenn said...

I am fairly certain that there aren't too many words you can read, at this point that will put you at ease until you get some answers--but please know that I am thinking of you and the baby--and that my prayers are with you during this. I know you will be strong and get through this. I wish you the best.

 
At 1:45 PM, Blogger amanda said...

I'm so sorry you're having to deal with this. I have everything crossed for you and himorshe. Thinking of you.

 
At 2:30 PM, Blogger April said...

Thinking of you Dee. Sending love and well wishes your way.

 
At 2:39 PM, Blogger lobster girl said...

This must be so hard for you. From what I've heard about the screening blood tests, it could indeed be a false positive, but I'm sure it's still torture for you to think about the next rounds of testing. I'm thinking of you, and hope all goes well and that you're able to stay sane over the weekend.

 
At 2:55 PM, Anonymous Anonymous said...

Dee,

I'm sending you so much love and prayer my head is hurting. I'll be sitting here waiting, holding my breath with you.

Take care my friend.

xxoo,
Emily

 
At 2:59 PM, Blogger Toffee said...

I am praying for you and hope that you will be comforted in whatever way possible until you find out more.

 
At 3:08 PM, Blogger Julianna said...

Oh noooooooooo..........please no.......

I am so very sorry you are having to go through all of this. I cannot imagine what you are going through.

Know that you, and your family, are in my thoughts and prayers.

 
At 4:08 PM, Anonymous Anonymous said...

Oh honey, I'm so sorry you're going through this. As you know, the rate of false positives is very high, so high I almost wish I never had the damn test done, at this point I might tell them not to give me the results. This just sucks. I so hope nothing's wrong.
I don't know what you're ready to know or hear, but I do know that a risk is not the same as a diagnosis. I also know that even in the absence of any indication on Level II ultrasound of Trisomy 18, the only way to be pretty much 100% sure is by amnio or CVS. That said, it is up to only you and your husband whether the risk of finding out for sure outweighs the risk of testing. NO ONE can make that choice for you. There is also the option of redoing the test and having a 3D ultrasound.
http://www.americanpregnancy.org/prenataltesting/afpplus.html
When I was spotting, I started to panic several times. The nurse on the phone had me do some deep breathing techniques so if you are feeling panicky it might help to breathe deeply in through your nose and blow out through your mouth. Your body has no choice but to slow down and relax.
If there is anything I can do to help you, just let me know. You will get through this.
Lily

 
At 4:44 PM, Blogger Jen P said...

Oh Dee, this is a nightmare. I hope you're resting well and can take some deep breaths.

The tests can all be compromised by any drug you are taking, as they're trying to test serum levels of proteins and drugs can interfere with protein production or the level that is in the blood. I'm thinking this is just a glitch. I'm going to pray this is a glitch.

Sitting here, with you, waiting.

Whatever you choose, amnio or not, I wish you the best.

 
At 7:57 PM, Anonymous Anonymous said...

You asked what to do and I'll give you my opinion. Have the amnio. I had one (and we didn't do it so we could abort, just wanted to be prepared), and it was no problem. Just be sure the person doing it has a lot of experience. Now, that's just my opinon, you will have to follow your heart. I believe that your intuition will tell you the right thing to do.

XO
Marla
Middle way

 
At 8:31 PM, Blogger Soper said...

Here's a hug, which is all I can do.

 
At 9:51 PM, Blogger Cricket said...

This comment has been removed by a blog administrator.

 
At 10:28 PM, Blogger NSR said...

Dee - I'm so sorry you are going through this. Sending you lots of prayers and love.

Nina

 
At 6:53 AM, Blogger ankaisa said...

I'm so sorry to see that you have to go through this! I really, really hope it's going to turn up to be nothing. I can see why you are freaking out. Try to hang on!

 
At 1:22 PM, Blogger Janet said...

Oh sweet Dee,
I am unbelievably sorry that you are going through this scare, and even more so that you have to sit with this fear and not knowing for any longer than a millisecond.
I just want you to know that I am here, waiting with you, hoping for you, making deals with the devil for you. I just hope it turns out to be a scare that you tell your little one about when they are 10 years old and asking what it was like to be pregnant with himorher.

My heart is with you,
Janet

 
At 2:21 PM, Anonymous Anonymous said...

Here's a petty thing to distract you...

About that Himorshe business, how about using

HimorHer
or
HeorShe ?

It sounds much more correct.

And I'm keeping my fingers crossed for you.

 
At 6:35 PM, Anonymous Anonymous said...

Hello... I just got a call from my doctor's assistant, and she told me that I tested positive for trisomy-18. I can't quit sobbing, and I just wanted you to know that I know what you're going through. I'm only 19 years old, and I just never expected anything like this... I'm also struggling with the testing decisions.. I'm praying for you.

 

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