/ The RE's Muse: Partly cloudy skies with a side of hope (updated)

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.

Friday, January 28, 2005

Partly cloudy skies with a side of hope (updated)

Some days, and we all have 'em, are tougher than others. Yesterday was one of those days for me. But you fantasic, wonderful, generous women helped make it a bit easier. Thank you, each of you. I know I've said it before when you've so generously given of yourselves, but gratitude never gets old.

A big hearty kiss and thank you also goes to my SIL--the physician assistant (PA) whose praises I have sung on this blog before. She sent me the following (among other very useful bits of info) and it raised a red flag immediately this morning:

Women with a false-positive trisomy 18 screen were heavier (175.6 +/- 43.8 lb versus 159.9 +/- 37.9 lb, P < .001) and younger (29.7 +/- 6.5 years versus 32.3 +/- 6.5 years, P < .001) than women with a normal multiple-marker screening test, but were not at increased risk for pregnancy complications.

Hmm...this made me go look at the test results (which I had the OB's office fax to me yesterday afternoon--so I could dissect the shit out of them and google myself to death). The results showed my weight as 140--140! I tell you. Ha, a number I've not seen since high school...scout's honor. So today I called the nationally known biotech corporate giant lab that performed the test to ask if an incorrect weight would skew the results. And you know what? It most definitely will! Holy mother of g-d--what do you know?! The lab said that if I would have the referring physician call them to correct the data, they could recalculate the risks again using the corrected information--something they assured me would take a few hours at most to do and it could even be done either by the end of the day today or first thing Monday.

And we're talking a bit difference in weight (okay, I'll throw this out there since we're honest with one another in this blog world--a 43 pound difference in weight!--and before you think I'm a giant fat ass, know that I've put on 16 pounds so far in 17 weeks of this pg--yikes! And even though the OB says I look great, I don't know if I agree. In the meantime, I prefer to refer to myself as pregnant with a side of chunky.)

So this afternoon, I called my OB's nurse and pointed out the error in weight to her. And yes, she agreed, such a large discrepancy would equal a wonky result and she was so sorry that this had happened--she apologized for the fear it must have caused me. She also said they had received three test results back yesterday and that she had gotten to check the data on two of them before the doctor took them to sign off on. Yeah, lucky me, mine apparently was the third one, the one she didn't get to check, which is why the error slipped by unnoticed (or so she says). Then she said the best part--she'd call the lab immediately and give them the correct weight information. And I'm hoping it sends those trisomy 18 odds right into the stratosphere (because well, 1 in 5? Gah, 20% is not a number I'm comfortable with). Needless to say, I'll be calling the nurse back later this afternoon to confirm that she followed through on her promise and see if the revised report has come back in.

I'm on for the genetic counselor appt Monday morning at 8:30 a.m. If the revised test result doesn't come by then, I'll have her call both the OB and the lab company to check where it is (unfortunately, the lab is in the Western time zone though). In the meantime, A and I have decided that we will have the level 2 ultrasound Monday at 1 p.m. and will ask them to look for "soft markers" for trisomy 18 (small head, clenched hands, rocker feet, choroid plexus cyst in brain, etc.) and if any of those show up, we will have the amnio done right then and there. That's the best I can do with the information I've found so far.

So thank you all again for your strength, your good wishes, your caring and your hope. You don't know how much you fuel my own hope as well as my strength. How I hope to share better, if not good, news with you soon. Have a lovely weekend ladies--you deserve it!

(7 p.m. UPDATE: The OB's nurse, bless her heart and tenacity, kept in touch with me all day. She just called a few minutes after 7 to let me know she had heard back from the lab--after numerous calls on her part--and the results had been recalibrated. My new risk for trisomy 18 is 1 in 25. Still not stellar by any means, but far better than the original 1 in 5. I now have a 4% chance of it being positive as opposed to 20%. I'll take those odds. A and I still agree to do the level 2 u/s on Monday to look for trisomy 18 soft markers. If none show up, I'll sleep better; if some do, we will not pass go and will proceed directly to amnio. Thanks again for your continued well wishes...will post more late Monday if possible.)

7 Comments:

At 5:19 PM, Blogger Twinkle Toes said...

Isn't it amazing that no matter how advanced our world becomes, no matter how amazing technology (medical or otherwise) becomes, it can all go down the crapper due to human error. Dee--this sounds very promising. Please post after your appointment Monday--I am dying to hear how you are doing. I will be thinking of you the entire weekend.

 
At 5:33 PM, Anonymous Anonymous said...

Oh God... I will have a better weekend now. I was really worried, not really about the baby, because of the high false positive rates, but because of you being so stressed and upset. I seriously almost cried a few times. Then again, everything makes me cry now.
Those errors are so totally unacceptable. BUT, it is every single person's responsibility to be their own best advocate, and to question and research every medical decision involving them, and you obviously took that responsibility above and beyond the call. It's scary how much internet research I do- mostly on reputable medical sites but also on word-of-mouth sites from people who have been through the experience- and it's absolutely terrifying how many times I've caught ALL of my doctors in untruths. Keeping up to date on the details of every test and treatment for every disease is mandatory for doctors, yet many, many things seem to pass right over them or slip their minds. It's so important to not trust everything you hear.
That's part of what will make you such a good mommy!
Yay! Good weekend.
Lily

 
At 6:42 PM, Blogger Julianna said...

Your SIL rocks!!!!! That is fantastic that she was so observant.

Phew........breathing easier now.

Have a restful weekend.

 
At 9:59 PM, Anonymous Anonymous said...

Yeah for your SIL and a good nurse who kept on it for you. I'm happy those numbers are so much better.

Hoping for the best for you.

xxoo,
Emily

 
At 3:11 AM, Blogger JenP said...

Dee this is a fantastic breakthrough! Fantastic! I am just so thrilled I feel like dancing!!


Now, if that lab could just hurry it up and get you those revised numbers...I think the entire community could sleep.

Best wishes for Monday.

 
At 12:43 PM, Blogger E. said...

Dee, thank goodness. So far, so good -- best, best of luck Monday.

 
At 10:25 AM, Blogger Kristin said...

Oh, those are much, much better results! I how the level II u/s shows only good things and you can start to breathe easier.

 

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