Monday, October 31, 2011

I think I hear the other shoe dropping

So the donor's karyotype is normal, except that it's not.

46 xx  normal female

but then at the bottom of the karyotype report it says: "A paracentric inversion of the heterochromatic region of one chromosome 9 homologue was observed in each cell examined. This is a heritable variant seen in the general population and is of no known clinical significance."

Anyone able to translate this? (I have Will researching right now as I'm about to go into a patient session.)

Apparently when the genetic counselor heard this new detail on the karyotype, she said the donor was out. Game over.

Until she heard from the donor nurse coordinator that it was our donor.

She knows us. She knows what we've been through. She knows how painstakingly we chose this donor. She told the donor nurse coordinator she will speak to the head of the genetic counseling department there for a final verdict.

So we are waiting on their call.

I want to cry.


***Update*** The donor nurse coordinator called. There will be no news tonight as the head genetic counselor has not yet been reached. We will hear the final verdict sometime tomorrow. In the meantime, we have done some research of our own on the significance of this finding and things don't look good.

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Oh no

I just received a voice message that there has been "a further development" with our egg donor's karyotype.

A further development?! WTF?

Currently on hold with the Denver clinic to find out what in the world this means.

Filled with dread.

Feeling like we just can't catch a break over here.


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If we dressed up for Halloween

Mo's costume
Pretty much sums up how I feel about my eggs these days...

Will's costume
minus the condom logo, other "sperm," and merchandise

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Friday, October 28, 2011

Egg donor karyotype

Our egg donor E's karyotype is normal!


So now just waiting on those pesky day 3 FSH/LH/E2 "official" results.

She better not go camping again and miss the test!!

Full steam ahead.


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Wednesday, October 26, 2011

Egg donor humor

So I'm basically a seedless watermelon?


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Tuesday, October 25, 2011

Egg donor screening update

We received more news from the Denver clinic on our donor E's progress through the many layers of the approval process. Here's where she is on everything:

  • day 3 bloodwork (FSH, E2, LH) 

  • psychological evaluation (including MMPI-2) 

  • baseline ultrasound

  • physical exam

  • pap smear/breast exam

  • urine toxicology screen

  • blood typing and Rh factor

  • CBC/chem panel, AMH

  • communicable diseases panel (syphilis, gonorrhea, chlamydia, hep B, hep C, HIV I & II)

  • and genetic testing (karyotype, cystic fibrosis, fragile x, spinal muscular atrophy, and hemoglobinopathy)
    So everything is done minus the day 3 bloods and her karyotype. We're getting there...this is starting to feel more real...

  • We actually had E's day 3 bloods drawn prior to sending her out for her one day work up, so we already know she will pass this with flying colors. I can't remember the exact numbers, but her FSH was something between 6 and 7, and her E2 was 15ish. So no worries there, although Denver won't accept this as her "official" day 3 results since it's not from their lab. Also, her AMH came back great at 4 (!) and her resting follicle count is 33, so we are really hoping she will have a great response. It's a help her numbers are so good since she is a first-time donor. Puts our minds a bit at ease about this part.

    Unfortunately, E. was camping in a remote area when her period came (she's a big lover of the outdoors) and wasn't able to make it this month for her day 3 bloods (aargh!), so we have to wait until next cycle. Apparently, the Denver clinic decision makers are still thinking we can cycle in early December despite's hoping!

    Our donor's blood  type is A+, which means that if we have a child with her eggs, our child's blood type will not immediately identify him or her as not related to me. We didn't choose the donor based on this, but it is a relief to me that our child won't be "outed" in a junior high or high school biology class based on their blood type not being possible from the combination from Will and me. Reassuring to me that our child will be the one in charge of when and where and with whom they want to share this info about themselves. E's Rh factor is compatible with mine as well, so no Rhogam shots in my future, which is also nice.

    The Denver clinic recently instituted a new procedure with egg donors in which they are offered the choice to sign documents giving their name, birthdate, and social security number to any resulting offspring on that child's 18th birthday. Our donor declined to sign this. I will find out more about why from our agency, but have to say I was disappointed. At the same time, I would not be so comfortable giving out my social security number to a stranger, so I totally get her reticence on at least that level. I asked the Denver clinic if she could opt to disclose name and birthdate without social security number, or maybe just the last four of her social security number, and they said no. Weird to me. If we were trying to track her down later, even the last four digits would help us determine which of several people with similar names is her but without leaving her feeling so exposed. I'll write a whole post soon on our desire for our child to be able to access the donor in the future as an adult if she/he wants to. It's a big deal to me/us.

    So that's the update as of today. More soon on a bit about E. and why we chose her, as well as the relationship we're trying to establish with her (aiming for a semi-known donation...)


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    Friday, October 21, 2011

    If you're new on the scene...

    Welcome - to ICLWers and Redbook readers!

    I've been trying to come up with a bit of an introduction in case you're new to this blog. It's surprisingly hard to write a summary statement of who we are and why we're here. I guess that's what happens after four and a half years of failed fertility treatments: 7 IVFs, many pregnancies, many miscarriages, no take home baby.

    I want to add yet. No take home baby yet.

    I'm a psychologist; my husband Will is a physician. We married at age 35 (and started trying even before that, but don't tell our parents). You're welcome to read about all the sad details between then and now if you want, but to cut to the chase, we found ourselves last fall experiencing our sixth consecutive pregnancy loss. After this devastating blow, we spent a looooonnnng time (nearly a year) grieving, attending to our marriage, and trying to decide between using a gestational carrier or giving another IVF cycle a try with donor eggs. We are right now pursuing the latter. Our donor is a spunky and brilliant 23 year old who just like us has never done this before. We chose her after reviewing donors from a number of agencies across the United States, and she's now in the process of passing through the many hurdles of the screening process at our rather stringent clinic.

    So far so good, but I have to tell you, it's been pretty nerve-wracking from where we sit. Nerve-wracking and very, very far from the 'if you ever have sex you'll get knocked up' fears instilled by 10 years of Catholic school education. Nevertheless, here we are.

    So if you're new here, I want to say welcome. I also want to warn you that if you are new(ish) to the infertility journey, we may resemble your worst nightmare. we apologize for that. Your situation will hopefully turn out to be more easily handled than ours...but then again, we never, ever thought we'd be here either. Things have looked quite promising for us all along. I make tons of eggs - more than many donors - and have even had them chromosomally tested and had several normals. We've had the best medical care in the country, which is arguably among the best in the world. And yet, obviously science has its limits.

    It's been a tough pill to swallow. It has been very hard to accept that between the two of us - and a village of medical staff - we couldn't make this work. And we are changed forever by our many losses. Just tonight Will used the word "scarred" to describe us at this stage of the infertility journey, and unfortunately, I don't think that's an exaggeration. We are end-stage infertiles. We used to be lighter. We used to be funny, even. But at the same time, we've learned some things along our journey that we hope will be useful to others.

    It's strange, but we never thought this blog would become well-read. Having readers wasn't even the intention when we first conceived of the blog. Originally, we used the space as a frame for thoughts on infertility between Will and me. Will has gradually taken a much quieter, backseat role in the blog and I've taken the lead. And in the meantime, we have been amazed and honored to have developed a readership - especially as I have been a very negligent blogger and commenter in the past several months.

    Recently, Redbook Magazine approached us and asked us to make a video about our infertility journey as part of their project, "The Truth About Trying." And they've just listed us as among the "Best Infertility Blogs." Some of you may even be finding your way here via their link. We are humbled by this. We haven't yet decided on whether we will make a video. Will and I both work in academic medicine and have pretty public lives and full research and clinical caseloads. We've always kept this blog anonymous, striving for a mix of deep honesty without (we hope) identifying details. Making a video feels very we haven't yet taken the plunge. We're toying with some different ways to make a video that would feel genuine, preserve our anonymity, and allow us to speak via that medium...if we figure out a good plan, we'll let you know : ). I hate feeling that way, because I don't want infertility to be stigmatized and nonlegitimized (and it is both), but despite the fact that we write this blog, our story is our private story and not necessarily something we want patients and grant sponsors and fellow medical school faculty searching and finding on the Internet. Despite our personal trepidation, however, you should check out the other incredible infertility videos. Many of them are really moving, and all of them are brave.

    So here we are. Longtime readers, I can't say enough about how grateful we are that you are still with us. Those newly arrived, thanks for stopping by. We hope you find something of value and that you stay for awhile.

    As I mentioned, we're progressing down the donor egg path right now...and with that, here are some posts that are brewing on the horizon:
    • Grief: the gift that keeps on giving
    • What does an IVF clinic do when the egg donor checks out medically but the clinic just doesn't like her? (I was curious, so I asked)
    • Disclosure: what we're thinking of doing with our future child and why
    • Mo's versus Will's take on using an egg donor: I guess you really ARE attracted to your opposite
    • Why we picked our donor - along with how surreal it is to try to choose half of your child's genetics
    • Fear of failing with the donor...and fear of succeeding, too
    • Known vs. semi-known vs. anonymous egg donation - what we've chosen (are trying to choose at least) and how difficult it is to navigate this maze
    • Agency vs. clinic donors: why using an agency was the right choice for us (I think. Check back in 6 months and let's see what I think then!)

    And you? How'd you find us? If you're a regular reader, how long have you been with us? Any questions for us? Anything you'd like to see addressed in future blog posts?

    Thanks again for reading.

    More soon.

    Mo (and Will)

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    Friday, October 14, 2011

    One-day work up - the second time's the charm?

    As promised, here's some of the details from our one-day work up a week ago.

    Objectively, the day was pretty uneventful. I had the expectation that the whole thing would be a breeze (after all, we've done this before), but I was wrong. The one-day work up was surprisingly draining. By the end of the day, we were wrung out.

    I started the day with a hysteroscopy, which hurt more than I remembered, and which was normal. Met with the donor nurse, who seemed OK. I am not warming to her as much as I did my prior IVF nurse, but oh well. We don't have to be buddies. When going over the huge binder they give you (my new "donor" one is grey, versus the white "IVF" one I was given before), she instructed me to be in close touch with her and basically said she is not going to be the one to be on top of everything. "I have 79 patients, so it's up to you to keep me up to date on all the details." Hmmm...Ok. I don't love hearing this, but if this is the case, it is good to know.

    Will and I both had lots of blood drawn for communicables and we're running some additional genetics on Will that hadn't been done before (CF, SMA, thalessemia, etc.) - didn't see the point since I'm not a carrier, but now we'd rather know.

    We met with Dr. Schl. and discussed everything that might help with implantation. We went over all the somewhat scientific things he supports (e.g., depot lupron - ugh, and the Denver miscarriage medication protocol of Claritin, Pepcid, and prednisone) as well as the more fringe immunological things that have been recommended to me by others (e.g., IVIG, intralipids, lovenox) and he reiterated he won't prescribe any of that but is willing to collaborate with someone else if that's what we want to do. So we'll have to decide. I'm not much of a believer in fringe myself, but we're at the edges of medical science with our situation, unfortunately.

    We all acknowledged that while this donor egg attempt is promising, it may not work for me. And so we spoke together about using a gestational carrier in the future if need be. The basic gist of it was a positive one: that between my uterus and a gestational carrier's, and my eggs and a 23-year-old donor's, that somewhere in that mix we would finally succeed. We told Dr. Schl. that we have had very preliminary communication with someone who, knowing our story, generously offered to be a carrier. He was very enthusiastic about this. She won't be available until later in 2012 and we would need to get to know her much better and see if she is even still interested (it's been a while since we chatted about it) as well as have her medically screened. She has PCOS, which we told him and he said that that is absolutely no problem, which was a relief to hear. Even though we're doing the donor egg cycle right now, it was so helpful to discuss this, because if we did need to go this route, I feel much more comfortable with this person than with any of the anonymous profiles we looked at. Hopefully we'll learn I can carry a pregnancy, but it was really nice to begin to talk to him about what might happen if I can't and hear his genuine enthusiasm about it. (And those of you who know him know that he is not a generally enthusiastic guy!)

    We met with the psychologist for the psych eval, which was fine but not really helpful. She seemed to conclude about 20 minutes in that we are very well read on this topic and have thoroughly considered issues like integrating a donor child into the immediate and extended family and the what's, when's, and how's of disclosure. And we have thought a lot about this. But interesting at least to see what the eval entailed.

    Will also gave his sample for new chromatin assay and semen analysis without incident.

    And then last but not least were the off-the-books visits. These were my highlights of the day. We saw our nurse and exchanged hugs and news.  And we met up with Danielle from genetics. She admired pics we have of our donor and said visually the match is a very close one, one of the best matches she's ever seen. And in general, she just made it so clear that she is rooting for us. She said she's kept my file at her desk all year rather than refiling it with the not-in-cycle files, and that every time she saw it, she'd tell herself, "I know they'll be back." "I know they're going to have a successful outcome somehow."

    Please let it be true.


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    Wednesday, October 12, 2011

    Two Denver donor emails to make a recipient girl smile

    Both arrived last night.

    Email number one:

    Hi Mo, 
    We saw your donor today.  She is lovely.    She has about 33 resting follicles.    I sent her home with a shipping kit for her to freeze and ship her Day 3 blood to us in.   Her last period was 9/21/11 so she should be starting some time next week. 
    And then from a different staffer not on the donor team, someone who we've become close to during our repeated Denver sojourns, who offered to make a point of meeting the donor:
    Hi Mo!
    I “bumped” into her today. She is SUPER cute and very well poised. I also chatted with the donor team this morning and asked them to fill me in on details. They were all very impressed with her demeanor and attitude. She apparently was very sweet and articulate. The ultrasound tech even commented on how sweet she was! The tech also was very impressed with her follicles (just over 30 total!). I’m keeping my fingers crossed that this all continues to go well!
    They liked her!! She's cute! She's articulate! She's "lovely" even!

    We also received word last night that she passed the psych screen and MMPI-2 with flying colors (I knew she was a psychologically solid young woman!)...they promise to let us know as she passes each stage of the testing.

    So here's where our donor is at on the list of needed approvals:

    • psychological evaluation (including MMPI-2) 
    • baseline ultrasound
    • physical exam
    • pap smear/breast exam
    • urine toxicology screen
    • blood typing
    • CBC/chem panel
    • communicable diseases panel
    • and genetic testing (karyotype, cystic fibrosis, fragile x, spinal muscular atrophy, and hemoglobinopathy)

    Good news so far!

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