Archive | October, 2010

Washington Post: For infertile couples, Facebook is a minefield

25 Oct

Thank you, Washington Post for validating my hot/cold relationship with Facebook.  I indeed use the “hide” feature liberally.

Washington Post: For infertile couples, Facebook is a minefield

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20 Oct

Good news!  We had our genetic counseling today and they confirmed what I was hoping to here.  We are NOT carriers of balanced chromosomal translocation!  Our fetal tissues had a translocation as well as some extra chromosomal material, but it is believed to be a random occurrence.    The results of our individual genetic tests that looked at all 23 of our chromosomes individually (from the test we thankfully already took back in February) show that we are both normal.   The good news here is that we can continue to try naturally and there is no hurry to try the painful and expensive approach of IVF plus PGD as we were considering.  The next steps are trying to get pregnant again naturally and relying on prenatal genetic testing (2 tests- amniocentesis and CVS)

The only bad news is that we continue to have unexplained recurrent pregnancy loss with no new steps to change the outcome for the next round.  The only changes I am making right now is trying weekly acupuncture trying to improve my overall health through diet and exercise.  I’ve been twice so far and I actually do feel something happening to my body while the needles are there.  The specialist I see also wants me to take chinese herbs, but) my RE doesn’t want me to take any herbs at the same time because she is concerned about the affects of the combination with the fertility drugs (Femara and Progesterone).

For helping with the emotional side my RE approved my request for anti-depressants.  I will see my primary care physician tomorrow to ask her for the actual prescription.  Of course I also have my blog community (thank you readers!), message boards, face-to-face support groups (via Resolve and at Stanford), individual counseling as well as (and a loving husband) for emotional support.  Next week there is even a seminar on the topic just up the road at Stanford.   It will be good to hear opinions from other medical experts on the subject.

In case you are interested, here is a nice link to information on recurrent pregnancy loss.

Fingers crossed hoping our chromosomes aren’t

14 Oct

The Genetic counselor called me just now and pretty much said that since we were both already tested and show up as normal chromosomally that we are probably not carriers.   If we are not carriers, that is  relief!  It really improves my hope that we can trudge along naturally and not have to rely on IVF PGD.  Fingers crossed that is the case!  We meet in person next week.

This past week I’ve been researching and discussing balanced trans-location to see if I can find out more.  All sources seem to agree that there are two solutions if you are a carrier- keep trying and hope (higher chances of miscarriage and birth defects, rely on prenatal tests to confirm if healthy) or up the odds and go for IVF with PGD.

In the meantime I signed up for another round of acupuncture.  This time at a place that specializes in fertility and pregnancy loss (Nurture Acupuncture).  The needles don’t scare me as much a the suggested diet.  They want me to avoid cold foods (hot and room temperature only), eliminate sugar and carbs and take chinese herbs including this stuff called royal jelly from queen bees.  I don’t know if I am ready for this.  I don’t really get Eastern Medicine.

Grateful for Group!

13 Oct

My pregnancy loss support group was good last night.  I met two new women who also had 3 losses, so we had a lot in common. I got everyone’s attention when I mentioned the trans-location. One of the women in the group had no results from her third loss because they people in the emergency room FORGOT to take a sample! She was at 14 weeks, too. She was understandably frustrated. In comparison I feel grateful I had a semi-scheduled D&C without the Emergency room drama of bleeding, esp. so far into the pregnancy. She had announced it to friends, family and Facebook, etc. After hearing her story, I am afraid to feel any confidence even after 12 weeks along.

Although the evidence is incomplete I am already thinking about what our next steps will be if our tests show that we have genetic issues.  My doctor and others in the know seems to suggest that IVF with PGD is the way to go.  However, I read that even PGD only tests 7 of the 23 chromosomes. To test them all you have to wait a month which means you have to actually freeze the embryo while you are waiting for the results. Oh, the drama! I image that impacts the odds of it working out as well. Also, I heard in group last night the pregnancies that were tested with PGD have a higher miscarriage rate than those that didn’t do the test. So much info!

Good news is we got our approval today to schedule an appointment. I am going to call first thing tomorrow morning. Also, at my loss group  I learned about an upcoming seminar at Stanford “Prevailing Over Recurrent Pregnancy Loss” with medical experts that you can talk to on the subject.

Finally someone in group talked about taking Xanex(sp?) to combat depression and loving it. She mentioned she only uses it on “special occasions” as it is addictive. According to the survey we took I am in the moderately depressed group (no surprise). I am considering taking antidepressants as well, mostly so my husband can have a happy wife again as I’ve been really down since this stuff all started almost 3 years ago.

Ominous test results, maybe a game ender

8 Oct

Yesterday my RE called and let us know that our results arrived from our “products of conception” that were collected at my D & C earlier in September.  I honestly wasn’t expecting the results to tell us anything.  Everything I’ve read about recurrent miscarriage is that it sucks and you just have to keep trying and eventually one of ’em makes it through, trial and error style.  What she said put the breaks on the whole thing.  The results didn’t make a whole lot of sense to me.  Apparently our little boy (yes I found out it was a boy, all they needed was the XY) had rearranged chromosomes.  Normally when people miscarry they have an extra chromosome or are missing one.  Seven of the 21 chromosomes were normal.  The remaining ones showed a “random unbalanced rearrangement of chromosome #4 approximately at long arm band 4q31… The additional material on the chromosome #4 long arm, regardless of its origin, makes this particular fetus/placenta unbalanced and abnormal… most likely cause of the loss of this pregnancy…”.

The day before my doc just gave me the green light to try again as my normal period just started up again and I was high as a kite to move forward with trying again, confident that in the next 6 months or less I’d likely get pregnant on Femara again like I did before.  I was reading the encouraging studies that say even after 3 miscarriages a normal, healthy person has a 70% chance of having a healthy baby.  However in her call the next day she clearly suggested I may be in the 30% group.  She suggested that we wait until we had genetic counseling before trying again.  Based on my abnormal results I may have a really high chance of miscarrying always (maybe 90% risk, vs. the usual 25% risk), or perhaps we have a genetically abnormal baby that my body brings to term.  As scary as these scenarios are, I am even more scared that we can’t do much about them.  What treatments are available for broken genetics?    While I am relieved to hear there was a reason (and thus can stop blaming myself) I am really scared that these tests are going to tell us that we just can’t have a healthy baby.  That is kind of a game ender.   My optimism that maybe 4th time is a charm just burst with her call.

Next step getting a call for approval for genetic counseling and testing…