April 30, 2009

TIME IS TIGHT

A SpouseBUZZ post: I'll Take "Wasted Time" for $200, Please

In the coming days, I plan to write up a summary post of my whole infertility journey.  After emailing with Julia from Here Be Hippogriffs, I decided that one post with everything laid out might be a good resource for new readers or people finding me via google.

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April 27, 2009

I WILL SET THEM ON FIRE

I want to murder my doctor and everyone who works for him.

(Despite that intro, this will be a boring post about playing telephone tag.  But I have to bang it out or I will go crazy.)

Last Tuesday when the doctor hit me with the bad news, he told me to call Tricare Referrals the next day.  (As per the discussion at the conference of making your blog non-military friendly, that is our health care system.  To be seen off-post by a civilian doctor, I need a referral through the insurance before I can make an appointment.  I have never had to do this before.)

I called Tricare Wednesday: no referral in their system.  Same Thursday and Friday.  The prerecorded message said it could take 72 hours, but on Friday I found a customer service rep to talk to.  She informed me that, despite the fact that my home is most definitely not located in that region, that I was calling the wrong number and should be calling the North division.  Hung up, called them, they didn't have the referral either.

Called back Monday morning: still no referral.  Got grumpy.  Left a cranky message with my doctor's secretary to check again and make sure the referral was made because we've already wasted a week of precious time.

The secretary calls me back hours later to say that, whoopsie, I wasn't supposed to be calling Tricare after all.  Who told you to do that?  Us?  Our bad.  You just need to confirm your referral in our own hospital.  Here, let me just transfer the call...yep, disconnected.

I wrote during the second miscarriage about how it's impossible to reach an actual human being in our medical system.  So she had disconnected me, and all I could do was call her back, leave another pissy message on her machine, and wait several more hours for her to call me back.

I finally get the right number to get connected where I'm supposed to be, and that is also an answering machine.  I leave a message, she calls me back an hour later, confirms my referral, and then tells me that it will take seven days from today until the referral shows up in Tricare.

At this point, I don't know whether to scream or cry.

We don't have time for this.  My husband deploys in less than three months, we've been told it will take us at least a month to get an appointment with this geneticist, and we just wasted a week playing phone tag?

What in the holy fricking shizz is wrong with my doctor?  Why did he quite clearly tell me to call the wrong place?  And I told him flat out that I have never had a referral before, so he knew I needed instruction.  They dropped the you're-a-mutant bomb and then shoved me out the door without even bothering to tell me which phone number to call for follow-up, so I wasted a week that we simply do not have time to waste.

At this rate, my husband will be gone before we can even get this process started.  And, ahem, we kinda need him around for the process.

I swear, these people are gonna scream so loud when I set them on fire.

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April 22, 2009

STREAM OF CONSCIOUSNESS

One of my cherished new readers pointed out last night that there is a blogger who wrote about her family's ordeal with balanced translocation. I am reading the archives of Here Be Hippogriffs now. One post I think might be educational for my readers, especially the chromosomes made out of play-doh: Balanced Translocations 101.

I don't know if this story will type as well as it's told in person, but I was doing some research on my chromosomes yesterday. I told my mother over the phone that chromosome 7 was related to things like schizophrenia, cystic fibrosis, and deafness. "What?" she asked. "DEAFNESS." "Huh?" she asked right at the same time I was repeating myself. "Being DEAF," I practically screamed. Then we both cracked up.

Thank you for your kind words and your wows and your tempered optimism for the future. Everyone has responded beautifully. I am doing OK and letting everything slowly sink in. I am still on the high of having an answer, but actually, this is a crappy path to be on. I don't want to do IVF. I really don't want to do IVF by myself while my husband is in Afghanistan. How am I gonna give myself shots in the butt alone? I dread that, truly. Thinking about it already makes me panic.

But, distractions abound. I am happily attending the 2009 Milblogs Conference this weekend. And...my husband will be going with me! I am excited to see my imaginary and real worlds collide. We will be staying with AirForceFamily, which is always fun, and Charlie gets to torment pit bulls again. Plus I am excited to see AirForceWife's knitting. She has been at it for a while, but I've never gotten to see her stuff. She's all nonchalant about it; conversely, I am all "everyone should see how jacked and tan I am" about my knitting. So yay.

And I think I get to see someone I haven't seen since 1995. So that's fun.

So yeah, check out those play-doh chromosomes...

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April 21, 2009

ORIGINS: SARAH

wolverine.jpg

Remember when I said my husband and I should play the lottery? That we had managed to hit 1% and 5% probability for our pregnancies?

I just hit 0.16%.

Yesterday, due to yet another snafu with The Fertility Clinic Of The Absurd, I got a preview of today's appointment: something did indeed come back on our genetic testing. I spent all night and all morning freaking out. I could barely concentrate on anything, barely breathe even. And when I got to the clinic and shared a bustling waiting room with jovial nurses and at least six very pregnant ladies, I broke down crying. Not my finest moment. (I absolutely hate that fertility patients meet in the regular old ob-gyn clinic. Talk about having it rubbed in your face constantly.)

We finally got into our own room, and the doctor handed me the results of the chromosome analysis.

Ladies and gentlemen, I am an X-man.

I am the 1 out of every 625 people who has a balanced translocation between two chromosomes. Luckily, google was invented so I could figure out what in the heck that means.

A translocation is a change in chromosome structure in which chromosomes are attached to each other or pieces of different chromosomes have been interchanged. An individual with a translocation is unaffected if there is no extra or missing chromosome material and if the break in the chromosome did not disrupt gene function. If there is no additional or missing chromosome material, the translocation is considered to be "balanced." A translocation is "unbalanced" if there is extra or missing material.

Individuals with balanced translocations typically have no medical issues though some do have fertility concerns, such as reduced fertility. The concern regarding having a balanced translocation is that, though the individual is healthy, the egg or sperm of that individual can have an unbalanced chromosome make-up that leads to the resultant embryo or pregnancy being unbalanced. The presence of an unbalanced translocation can lead to an embryo not implanting, a pregnancy being lost or a child being born with mental and physical problems. Individuals with a translocation may, therefore, experience multiple pregnancy losses or have a child affected with physical and mental problems that may be lethal.

Translation: no natural babies for us. We have been referred to geneticist at a Big Name Hospital in the nearby metropolis, so I will be calling tomorrow to try to get an appointment there. They will be able to tell me if the particular translocation I have means that I can even procreate at all, and if so...it won't be in our bedroom.

See, I told you it wasn't stress! (wink)

If we are to have any chance at all, it will have to be with IVF using Preimplantation Genetic Diagnosis. Google again, how did I live before you?:

Preimplantation genetic testing is a technique used to identify genetic defects in embryos created through in vitro fertilization (IVF) before pregnancy. Preimplantation genetic diagnosis (PGD) refers specifically to when one or both genetic parents has a known genetic abnormality and testing is performed on an embryo to see if it also carries a genetic abnormality.

I know we discussed this a little when I wrote that post on designer babies, and I debated whether to even mention that this is the route we'd have to take. But I decided that I have no ethical qualms about investigating this line of action, so I truly don't want any commentary if you think this is "playing God" or something. Please. I respect your position, but I'd prefer if you not advocate for it here.

Once we meet with the geneticist, we will have to decide if creating a Baby Grok will be worth the extraordinary complicated and fretful process. Nothing guarantees that PGD will even work: in this clinic in New Jersey, "in approximately 22% of cycles, all the embryos were chromosomally abnormal." But, if we could get some embryos who aren't mutants like their mother, the end results look promising...or at least better than the crap sandwich we've recently been eating:

Reduction in the Chance of Having a Child with the Translocation
Our personnel have performed PGD of translocations in over 100 cycles. Normal or balanced embryos were available to be transferred to the patient in the majority of cycles. Pregnancy occured in approximately 40% of the cycles with transfer. None of the delivered babies has been found to have and unbalanced translocation.

Reduction in Pregnancy Losses
The PGD procedure significantly reduces the chance of pregnancy loss. The patients who achieved pregnancy after PGD had experienced miscarriage in the majority (~85%) of their previous pregnancies. When these same patients underwent PGD, just fewer than 10% of pregnancies were miscarried. This is a significant reduction in pregnancy losses.

So that's where we're at.

On the plus side, we have an answer. We finally know the reason this has been happening to us. It is concrete and there is a potential workaround. I also have found some peace about the previous miscarriages: those poor babies had severe defects. It was not my immune system attacking them, as I had feared. I now know they died because they weren't growing properly, which comforts me somewhat.

I also am overwhelmed with relief that the problem is on my end instead of my husband's. I have puzzled people with that statement before, but I love my husband so much that I would rather bear the burden of being the "cause" of our problems than to watch him have to live with the guilt I am certain he would feel. I know I would not love him one tiny bit less if he had been the mutant, but he is the type of person would've been disappointed in himself, and I am glad to spare him that feeling. I also know, because he told me, that he wouldn't trade me for a non-mutant wife, and I believe him.

Plus he gets to tease me about being an X-man; he begged me not to take side with Magneto against normal humans like him. Heh.

So I'm afraid my experience is no longer very applicable to others who are struggling to have a baby or losing the ones they do have. Unless you too fit the 0.16% like I do -- and why do I keep giggling, imagining onlookers muttering "Freak!" like on Deuce Bigalow? -- your journey won't end up like mine, being forced to cherry-pick embryos from amongst the FAIL ones to create a frankenbaby. But hopefully my experiences and writing will still bring people some bit of knowledge or empathy.

So that's my story. Snickety snickety.

For further reading, see:
Balanced Translocation and Recurrent Miscarriages
Handbook of Genetic Counseling/Balanced Translocation
Preimplantation Genetic Diagnosis (PGD) for Translocations

I also have decided that I need a blog category for infertility. No one sets out on this journey to need that kind of label, but that's where I'm at, and for a while now I have felt that filing these posts under 'personal' just isn't cutting it anymore. I plan to comb through 2+ years of posts and re-categorize them.

P.S. I feel pretty OK today, and I am going to get loads of mileage out of calling myself a mutant. I am happy to have an answer and ready to see what we might learn in the next phase. So no need to worry.

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April 20, 2009

DEAR DARLA, YOU'RE THE BEST

Darla and I are currently going through much of the same -- a break from babymaking, upcoming deployments, etc -- and she wrote a great post about it.

I'd be lying if I said it hasn't been a little calmer around here since we took a hiatus from the baby making.

This past month has been very relaxing for us. No thinking about babies, no trying for babies, nothing. I had honestly been afraid that we might never be able to go back to "normal," that two years of forced coupling and repeated heartbreak might be hard to undo. But we have spent the past month happy with each other, as happy as we were before this whole mess began. So that was a relief.

I'd be lying to say I wasn't enjoying last weekend. [...] As slightly inebriated baby sister and I stumbled down the streets of Portland in the wee hours of the night behind our spouses, it was a bit of a relief to not be neglecting any children or having to place their care in someone else's hands while being completely stupidly unresponsible for myself. Sometimes it's joyous being an adult, and yes I know they have these things called 'sitters' but those barren like myself have to see silver linings everywhere.

I am quite good at the silver linings game by now. This weekend I ran to the grocery store to buy carrots for Charlie's birthday cake. I wandered around the store for a while, checking everything out. $30 in groceries later, I checked out and went home...to find that I'd left the carrots at the store. Back in the car, run back in the store, back home.

That was annoying, but imagine the ordeal toting a kid. I try to remind myself of stuff like that all the time.

I'd be lying if I said I wasn't melancholy on occasion.

Snort. Sitting here doing nothing and then bursting into tears for no reason is just a way of life for me anymore.

Yet, as is the case in life, some evenings are crazier than others and sometimes the littlest stupidest thing, like someone's FB profile photo, can remind you of the exact spot you are at in life. For instance barren, at 29, here, now.

Replace that last sentence with "habitual aborter at 31" and that's me. I can't stand Facebook updates about other people's ultrasounds, and their healthy babies, and their profile pics of their bellies. Sometimes I have to stop myself from making mean comments.

Tomorrow we head to the doctor to find out the results of the tests on our genes and my immune system. I have completely freaked myself out by reading the book Is Your Body Baby Friendly? and now I am imagining the worst.

But truly the worst would be to hear that there's no cause for the repeated miscarriages. Then what?

And Darla, for Easter we had pork wrapped in pork. Mmmm.

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