Saturday, August 27, 2011

Slamming on the Brakes

From cruising down the highway feeling the wind of my passing to...SCREECHHH!!! 

I got a call this morning from the doctor.  Not the nurse. The doctor.  My genetic testing had come back.  I figured I wouldn't be a carrier for any genetic diseases since there was no family history and I wasn't a part of any at-risk group.  So much for that.  Apparently I'm part of the 1 in 50 that is a carrier for spinal muscular atrophy.  So now we have to get DH tested before we can proceed with IVF. 

Under ordinary circumstances, this would take 3-4 weeks: time to order the test, get the kit sent to us, mail back a sample, and about 2 weeks for processing.  However, we aren't sure if DH's insurance covers it.  Which is better than being sure it doesn't...we have a chance because the test isn't necessarily for infertility.  If it's not covered, we'll wait a little longer to see if DH's new insurance covers it.  Yes, new insurance.  He starts a new job on 9/26.  For those that know us in person, you'll have to ask him about it.

I asked one of the nurses whether I should continue taking my Pills until we are able to start the cycle or if I should stop them instead.  She told me that I could do either one and that some people prefer to get off of them as soon as they can because of side effects.  Um, no, I'll keep taking them, thanks.  The worst part of TTC (until it reached the point of IF) was not having the Pill helping to keep me out of pain.  Besides, the nurse mentioned that if I kept on them, we could start the cycle whenever we had the test results since we wouldn't have to wait for me to take the Pills for 2-3 weeks.  Because of that, I don't have to start the cycle at any specific time of the month, which makes it easier to control (in a broad sense) when all the appointments end up falling. 

From what I've been told, it's not that big a deal even if DH shows up as a carrier for the same thing as me.  We would need to use PGD to make sure that no embryos with the wrong genes are transferred.  I shouldn't have any problem having enough embryos to still transfer, given the number of antral follicles I had.

At this point, the main thing I feel is stunned and jarred, as if I really had slammed on the breaks when driving on the highway.  I had a few tears come to my eyes as it hit me that we had to put this off, but I haven't broken down crying or anything.  I don't know if, as it sets in, I'll be sad or angry or what.  What does bother me is that putting off the cycle decreases the chance (already small) of DH's dad getting to meet a grandchild.  He's got a year at most left unless a miracle happens, and a year is with chemo that would be utter hell to go through.

As we were watching hurricane coverage tonight, DH noticed again an ambulance-chasing commercial for people who had given birth to babies with defects after taking antidepressants during pregnancy.  One of the antidepressants mentioned was Zoloft, which I've been told by multiple people (including my psychiatrist) is safe to take during pregnancy.  DH raised the question of whether taking medications at all during pregnancy is a good idea.  Like I told him, it's a very small percentage of people that have problems, but then again, it's a very small percentage of people who are carriers for SMA, too, which makes me less confident about trusting to chance even when the odds are that stacked.  If I was to do it without meds, I could.  I made it through worse than those hormones without meds.  The biggest issue would be DH's reaction to me, though.  He already worries enough about what pregnancy hormones would do to my depression, since a bipolar friend had to be off work for about 9 months after giving birth to get her meds straightened out.  I told him I'd ask one of the prescribers at work what she thought, and we would make a decision over time based on that.  I'm fine with the idea of being off original plan was to try to do it med-free.  I only went on the Zoloft when I felt myself dipping into an episode after losing a friend to cancer.  So, we'll see.

1 comment:

  1. here from LFCA. i am a carrier for CF (as is my father), despite no family history. plenty of relatively common genetic diseases won't show up in a family history, because (in the case of a disease with simple pattern of inheritance, like CF) each child of two carriers has only a 25% chance of being sick, and most people aren't carriers.

    SMA is more complicated, because it isn't just one gene in question. (forgive me if you know all this: my dad is a pediatric geneticist, and i can't help myself.) it's worth it to get someone to explain yours and DH's results to you in more thorough terms than just "carrier" or not, especially if he comes up with some affected genes.

    SMA is really rare, but in the world of genetic disease, it's *relatively* common. my dad asked me to get tested. (because we were using donor sperm, the situation was different: we used a donor known to be "negative" while waiting on my results. if i had been positive and we hadn't known the donor's status, i might have considered doing CVS.) my insurance did pay. i wanted them to certify in advance that they would, so i had my RE send a letter. no insurance co will want to risk paying bills for SMA if they can avoid it, so i imagine DH's company will pay if they know you are affected.

    good luck and hope the wait is short!