Thursday, July 22, 2010

In Which the Anxiety Level Goes Up a Notch

Welcome July ILCWers! You can get a quick overview of my story on the sidebar. Currently I’m trying IVF for the first time, which is exciting and terrifying all at once.

I posted last week about my attempts to get my RE to start me on Lovenox at transfer rather than waiting for rising betas. With my history I want to give this my very best shot (ha!), but she has officially refused my third desperate plea. Three strikes and I’m out. I don’t see any way to prevail on this one.

She sent me an article saying heparin didn’t improve outcomes [Aspirin plus Heparin or Aspirin Alone in Women with Recurrent Miscarriage; New England Journal of Medicine; March 24, 2010] but as this article notes, there are all kinds of conflicting studies on this. Even though the cause of my pregnancy issues is unclear, I felt like we have enough clues here to justify aggressive action:

First Loss - Jeremiah (January 2007 at 21w 3d) cord hypercoiling

Moderate positive result on anticardiolipin antibody IgG; after six weeks this was retested and the level was "inconclusive"

From Pathology: “Received is placenta, umbilical cord, and fragments of blood clot and decidual tissue. Twisting of the cord appears abnormal, with more twists per centimeter than average. The placenta appears somewhat disrupted.”

Second loss: Miles (July 2007 at 18w 5d) cord stricture
Additional testing on me showed I am heterozygous for MTHFT mutation C677T

Lots of old blood in the amniotic fluid; his blood was also found in my circulation

I took baby aspirin during this pregnancy from 6 weeks onward

Anticardiolipin was normal this time


I do have two living children, a son born 2003 and a daughter in 2005. They also had placenta/cord issues, especially my son:

David (2003) - Lagging growth was first noticed at 20 week ultrasound and became more severe by 30 weeks

Born at term weighing 5 lb. 0 oz. with meconium and nuchal cord x1; APGAR 2/7; 5 days in NICU

We were told he had a small placenta and thin cord; this was not sent to the lab


Tania (2005)Possible partial placental abruption during labor

We were told the placenta had “two sacs”; it was not sent to the lab


I don’t think there’s any way around my RE on this issue - I'm sure my Gyn wouldn't get involved and I’ve only met with a perinatologist once almost three years ago (she said use Lovenox but I don’t think she’d overrule my RE on when to start). The hell of it is, the doctor at The Other Clinic was going to have me on Lovenox from transfer! I don’t know if Lovenox/heparin two weeks earlier would make any difference, but I sure don’t want to end up holding another dead baby and wondering “what if”. *sigh* I’m feeling anxious, desperate, and disobedient, but there doesn’t seem to be any way to get my hot little hands on those syringes.

18 comments:

caitsmom said...

Ah, it's such a rollercoaster. Sending good thoughts!!!

Oak said...

How incredibly frustrating. I wish I could get my hands on some off the black market for you, but I don't know if there's a black market for Lovenox. :(

jrs said...

sorry to hear about that disappointment

are you taking heparin and aspirin as well from the get go? I don't remember.

i am so hoping things will be successful for you.

Kelly said...

I'm so sorry for your losses. I admire you so much for keeping your hope and faith in your journey to be a mom.

ICLW

MUMMY IN WAITING said...

I'm so sorry for your heartbreaking losses. Just wanted to wish you all the best for your IVF cycle, I hope you get some good news soon, sounds like you deserve it! (((HUG)))

ICLW#109

Cape Girl said...

I'm so sorry for your losses. I'm homozygeous for the same MTHFR mutation as you. I lost my baby boy at 26 weeks. I asked about starting Love.nox right after my transfer, but my RE said the same thing, after a positive pregnancy test. I would at least try to talk to the Gyno, you never know, they might give you the script. Best of luck with this cycle!

ICLW#175

Erica said...

Here from ICLW, thanks for commenting on my blog! You have experienced so much, I wish I could give you big ((HUGS))...I will be following your journey too, good luck with IVF, that is probably my next step!

Anonymous said...

I so should not be admitting this, hence the anonymity. But I'm uninsured so I like to avoid the doctor as much as possible. And there are ways to get medications without a prescription. It's how I got my stash of fertility drugs. The downside is you're not sure if they've been stored correctly, or if you're getting the genuine article. I haven't had a problem with it yet, but all I wanted was some Clomid.

I bet you could get your hand on 2 weeks worth of Lovenox really easily, because I see it on the message boards all the time. If you're interested, try the Topix Infertility Forum, alt.infertility on Google Groups, or the Medical section of Free Garage Sale.

Aly said...

I'm sorry your Dr is not listening to you. That is the worst. Good luck with your IVF cycle. I can't wait to follow your progress. Thanks for stopping by my blog, your comment totally cracked me up!

Happy ICLW
~Aly
www.infertilityoverachievers.com

Lori said...

I WISH I could get my hands on some for you because I really, really disagree with your RE. Of course, I am NO doctor, BUT...I would prefer to err on the side of CAUTION! NOT TO MENTION that my sister sees an amazing RE at Duke who insisted that she take Lovenox as soon as she could in a cycle she was planning for pregnancy, and CERTAINLY from confirmed ovulation...this doctor is a specialist my sister was referred to through her Lupus doctor because of her 10 miscarriages (not to mention cord issues with my niece and nephew!!!!)....I'd call my gyno, I'd DEFINITELY call the peri (mine work together, but have different opinions and I value both!!) and then I'd look into those boards anon mentioned.

I wish, I wish, I wish for you!!!!!

April said...

I"m so sorry to read about your losses. Best of luck on the IVF cycle!

ICLW

Bethanie said...

So sad for the loss of your babies! I admire your willingness to speak out about your issues and educate others. Hoping for miracles in your IVF cycle!
ICLW#166 Bethanie

Heather said...

I am so sorry for your losses. How frustrating about the Lovenox. I did two IVF cycles at SIRM and they start it from the beginning of stims if you are positive for APAs. You might want to post about your situation on their website (their doctors answer questions on their forums). Their website is www.forums.haveababy.com.

Best wishes in your IVF cycle.

ICLW

Lora said...

I am sorry for your losses, and very sorry that the doctor doesn't seem to want to take your thoughts on the matter in to consideration. I mean even if she thinks it may not help, if it definitely won't HURT then why not do it?!?

Liddy said...

Sending lots of good thoughts. I am so sorry about your losses.

An ICLW Visit from #107 (mfi, speedskating, strength)
liddy @ the unfair struggle

Glass Case of Emotion said...

Visiting from ICLW. I am wishing you much luck and positive wishes as you enter IVF. It's such an emotional time. I wish you luck with your Lovenox questions, I may be pursuing that next after 3 early losses. I hope IVF brings the success you deserve.

Suzy, Not a Fertile Myrtle said...

Wishing you lots of luck on this next cycle.

~Happy ICLW~

Ashlee G. said...

I'm sorry for your losses. I wish you the best of luck this cycle!

ICLW #50