Testing testing, 1, 2, 3...

I had blood work drawn four times this week.

I think that might be a record (during pregnancy itself, not IVF with its daily draws).

Join me for a week of pregnancy blood letting, if you will.

On Monday, I had blood drawn for a new test I had heard about from someone in the comments section.  It's called the MaterniT21 Plus test and is offered by Sequenom.  The test is not yet available in New York State, but somehow my hospital has a waiver, or gets a waiver for each patient, or something. It tests for Trisomy 21, 18, and 13. Now we should be in the clear for all of those, because this embryo (fetus?) had all chromosomes tested by microarray before we transferred back. But...I know there is a small error rate on the microarray....and we're very unlucky people. Since the test is noninvasive, we figured no reason not to get it, just to be sure. Our plan is to avoid amniocentesis and CVS, which are invasive and have a small risk of miscarriage, unless something super scary turns up in the next several weeks that seems to suggest one of those is necessary.

Let me pause to note how strange it feels to type "in the next several weeks," as though I'll still be pregnant then. I'm kind of living in both realities right now, the "imminent miscarriage" place, and the "things might just be all right" place. A little bizarre, but true.

Funny too that I would ever consider foregoing CVS and amnio. This is a big surprise to me and not what we thought we would choose. I'm generally a need-to-know person. But honestly we feel this pregnancy is so precious and delicate that we don't want to do anything that could even potentially damage it.

The MaterniT21 Plus test takes a couple of weeks to get results on. Ten business days, I think. I would be absolutely fine with having a down syndrome child, if I knew I could carry him/her to term. We're looking for a child who can live, not a perfect child. My fear is more another loss. Trisomies 13 and 18 aren't usually compatible with life (or with life past the first year). We might not continue a pregnancy with one of those disorders. But I know the chances of any of those being a problem are very slim. This is supposed to be a euploid embryo, and our clinic has a very good track record with their testing, but we just want to be thorough.

Tuesday, at 10 weeks 3 days, I had my progesterone and estrogen tested, which I was a little nervous about given the bleeding episode over the weekend. But the levels came back okayish with estrogen at 852, up from 833 last time (that's with two Vivelle patches) and progesterone down to 28.13 from the last result of 57 (that's with one endometrin suppository and only 1 /2 cc progesterone in ethyl oleate, instead of the previous 1cc). My nurse in Denver said to keep all meds the same and retest Friday. 

Thursday I went to the high risk OB area of my hospital and had my blood drawn for the nuchal translucency screening test. I knew they would be testing my beta HCG and another protein called PAPP-A (pregnancy associated plasma protein A). HCG is higher than average in trisomic pregnancies and PAPP-A is lower. 

It was a little saddening to fill out the nuchal screen blood work paperwork. Have you had a pregnancy with trisomy 21 previously? YES. Have you had other aneuploidies? YES. Monosomy X, Triploidy, Trisomy 16. I had to write down the side of the page because there wasn't enough room for all of the problems we've had. They also asked the savvy question of whether this was an IVF pregnancy and if so, what was the age of the egg at the time of retrieval. Nice. So we get to shave almost two years off of our odds. The egg was from a "young" 38 year old me, not my current "young" 40-year-old self.

I was shocked when the the nurse said the nuchal blood work would only require a finger stick (really? Why all these previous vials of blood to test my HCG then??). They pricked my finger, which proceeded to gush like a fountain, making it quite easy for the nurse to fill her row of paper blot circles with my blood. What can I say, I'm on lovenox. I'm a champion bleeder. We got the job done, and then some.

Which brings us to today....Friday....and another progesterone and estrogen check. Results coming later today. I will add them here when they come in. Hoping the progesterone hasn't dropped any lower. The estrogen seems to be hanging in strong, even rising a little bit, which makes me smile.

Thank goodness I work at a hospital. If I had to commute to get this done this many times, I would have an awful lot of explaining to do at work. As it is, I can duck out quickly and am not even missed. Job perks I didn't think of when hired.

Next ultrasound live baby check is Monday. And then...if the baby is still alive, the nuchal ultrasound is scheduled for Thursday. Feels like an important milestone. Not sure why. 

I sent my mom, who lives across the country, a framed ultrasound picture this week that should arrive tomorrow and knock her over with surprise. She doesn't know we even did the FET. We will be telling Will's sister in person on Easter morning. That's it for family telling for a while - we'll tell our other siblings, and my dad, later. These are all of the "most intimate" people. Our moms, his sister. We've always told them every time we're cycling, so keeping things mum this long has been very different. 

Wow. Really hard to believe time is still passing and that as far as I know, we are still pregnant. How lucky am I? Pretty damn lucky. Unbelievable, really.

Mo

  

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The Colorado genetic counselor rocks

Thanks for all of your blogoversary wishes. We are ready to look forward to the coming year - and hope that there are fewer disappointments and more successes - please! Loved your comments reminding us to focus on what's important - our love for each other, and to be mindful of the accomplishments the last year has contained. We're with you guys - may this be the last year that this is an infertility blog!
So, finally, to fill you all in on the rest of the Colorado visit...
Our last meeting of the day was with Danielle, the genetics counselor. I'll be honest - I really didn't want to go to this. I mean, I spent an hour and a half with an M.D. geneticist in New York just a couple of months ago. What could this counselor possibly add? That said, once we met Danielle, I liked her immediately. And what she had to say perked up my ears rather quickly as well. We were drawn to Colorado because of their microarray technology. She said, however, that after reviewing our files, she'd spent the day meeting with the scientific director and making calls on our behalf because she felt that microarray wouldn't be enough for us, given my cancer treatment history and the fact that our losses have included both trisomies and polyploidies (overachievers, us!).
Basically, she said that microarray can only detect trisomies. Apparently, the way the technology works, microarray looks for alterations in the patterns of chromosomes - so one more or one less of a particular chromosome, a heterogenous problem. Microarray does not pick up polyploidy - because in this situation, there is an extra set (or sets) of every chromosome. And so the test reads it as normal, since it's a homologous defect across the entire set.
Who knew?
But surely, we're not the first couple to ever cross the Colorado Clinic's threshhold who's had a polyploidy plus a trisomy? I asked this, and Danielle assured me that although it is unusual, we are not.
But she said in our case (lucky us!), they were worried the polyploidy problem (usually a 1 in 1,000 occurrence) might have a tendency to repeat.
Hearing this, part of me was like YES! Finally, someone agrees with us that there is something unusual here - that these silly population statistics may not apply to us! This part of the information was super validating and welcomed. At the same time, I also had a Oh no, we are so f*cked up sort of reaction.
Bottom line, according to Danielle, we will need to do both microarray and FISH screening (the type of screening they use in PGD) to look for both trisomies and polyploidies. Because they do not want me to transfer embryos back thinking they are normal and then find out that they aren't normal after all. So they want to do a single biopsy of each blast (should we be so lucky to get blasts), split the tissue from each blast and send half of it for FISH and half of it for microarray.
Sounds good, right? The only problem is that each of these tests costs approximately $5,000. So it would add an additional $10k on top of the usual ridiculous IVF fees.
Ha. Ha. Ha.
Before we both fainted, Danielle quickly said that the Colorado clinic would never expect us to carry all of this cost and that they were already negotiating with the labs involved to waive fees so that we could have both tests run for no additional cost. In fact, she waived her $150 fee that day to get us started down the road of savings and said they were going to figure out how to shave $5,000 out of things somewhere so we don't foot the bill.
This was our final appointment of the day and we after we finished speaking with Danielle, we got into our rental car and drove directly to the airport to catch our flight home. What a way to finish out the day.
Our final impression was Wow. They are really thorough and have thought about our specific situation and what would be best for us. They are really looking out for us. Needless to say, we were impressed.
We'll keep you posted on what they're able to work out for us.
Mo

Home again, home again: Back from the one-day work up

We've returned from the Rocky Mountain clinic, and I have much to say about our journey, which will likely trickle out over the course of a few posts.

While out west, we saw a brewery called "Rock Bottom" and I thought, that's fitting. That's why we're here - we've hit rock bottom in this Trying To Conceive business.


We're so close to our absolute nadir of hope that we flew halfway across the country for potentially our last shot at having a genetically related child. We have long heard of this fabled Colorado clinic and had done a phone consult with their director way back in Feb. 2009. At that point, he had been quite sobering in his opinion, but had recommended a comprehensive chromosomal screening called microarray as our best option if we wanted to try one more time with my eggs.

To recap everything between the phone consult and now, we've done two more IVF cycles at our NYC clinic, planned to go out to Colorado twice, but gotten pregnant both times, and subsequently miscarried both pregnancies. So it feels a bit crazy but really kind of cool to actually finally make it to the one-day work up. We brought all of our information with us, curious to see what this clinic and specifically their head doctor, Dr. Schl. would have to say.

What a whirlwind trip - there was really not a moment of downtime. Will and I were both pleasantly impressed with the Colorado clinic's professionalism and efficiency. And honestly, at this point, I'm a bit cynical and am almost looking for something to criticize. So it was quite something that consistently we found this clinic to be really on their game.

For example, throughout the day of appointments, everyone we encountered had read my chart and knew our history. This clinic definitely gives an impression of knowing what they are doing. And when we met with Dr. Schl., he was perfectly pleasant and very informed and articulate, despite his reputation for not having the best bedside manner. He didn't sugarcoat anything, not a morsel of it. But he wasn't overly harsh in the way he delivered what seemed to be his honest opinion either.

Below is our schedule for the day. It was pretty back-to-back and well-organized. Lots of information presented and many tests and some procedures done. I expected this to all be (yawn) redundant (and I therefore predicted I would be annoyed) and some of the things were redundant of course, but there were a number of interesting things we discovered (in bold below):

9:00 - 9: 30: (but it ran longer): met with Dr. Schl (will post details in a separate post. Very interesting chat).

9:30-10:00: met with laboratory people and signed many consents.

10:30-11:00: very detailed ultrasound for me, semen analysis for Will. Turns out I have three fibroids that won't affect anything. According to some kind of doppler scan, I also have blood flow resistance to my uterus - for which they recommended 8 sessions of electro-acupuncture before embryo transfer. Who knew?

11:00-12:00: met with IVF nurse for full hour of education on how things work at this clinic in terms of contact with staff, cycling, testing, etc. Cool to see how they do things as compared to my clinic (more on this later). Geesh - this clinic really wants us to be informed - they presented us with a full binder of materials and literature - this is more info than my clinic has ever given me across two years of treatments.

12:00-1:00: lunch (was supposed to be a half hour but they had mercy on us).

1:00-2:00: met with IVF nurse for another full hour for education on genetic testing required for heritable diseases, required communicable disease testing, medication administration, etc. Good Lord, these people are thorough in their written materials and presentations (hmmm...does someone on staff have obsessive compulsive personality disorder, perhaps? Across the board, the attention to detail was...actually a little scary...but also kind of comforting.)

2:00-2:30: lots of blood work, plus was offered and accepted the chance to get the H1N1 shot - cool! - it's not available at my hospital yet. Don't have it in front of me so can't remember everything that was ordered in terms of bloodwork, but at least two things were new: AMH testing and CMV antibody testing. Will be curious to see results.

2:30-3:00: office hysteroscopy with Dr. Schl. Hurt less than I thought it would. (Given that this cost $645, I was slightly annoyed that as expected, everything in ye ole' uterine cavity is normal). Structural problems are not our problem.

3:00-3:45: met with genetic counselor (thought this meeting would be totally redundant and annoying, but it turned out to be quite useful and surprising...so much so that I will tell you about it in a separate post).

We arrived home very late last night, picked up our puppy, and dropped like dead people into bed. Right now Will and I are trying to dig out from all that went on in our work while we were away and emotionally process everything we heard. As well as attend to Ms. Moxie who had to go to (gasp! she's just a puppy!) a pet sitter while we were away.

Everything we saw and learned gave us a lot to think about. I promise to post again soon when I can. Bottom line, at the moment, we are anticipating we will likely give this IVF with microarray thing a try. It may or may not help us, but at least we'll know. And maybe then we can move forward. Or, even better, although probably unlikely, maybe IVF with microarray will actually work and we'll end up with a baby. Wouldn't that be something.

Mo

Regroup with the miscarriage wizard

Today was the follow-up appointment with the reproductive immunologist, a.k.a., the miscarriage wizard. I stand by my first impressions from the last appointment - this guy is a nutter. Will has taken to calling him the "mad scientist." Throughout the meeting with the doctor, it was hard to get a word in edgewise, he couldn't seem to remember who I was and had to review my chart in front of me to remind himself of my history, he kept mixing up Will's and my professions, etc. Sigh. He may be brilliant, but he does a poor job of making good impressions. Both of us almost felt sorry for him.

As for the test results - there were some abnormalities. Not surprising, I suppose. If you take enough tests, you're bound to find something, aren't you? The wizard was not good at all at explaining the significance of them in any kind of convincing way so Will and I will be doing the research to educate ourselves. But basically, it turns out that the following immunological tests are "not normal":

antiovarian antibodies

TH1:TH2 cytokine ratio

natural killer cell assay

leukocyte antibodies

DQ Alpha antigen

The gist of it is that these immunological issues can supposedly impact implantation negatively and also lead to clotting issues (although all my thrombophilia indicators are normal, go figure). So the wizard recommended baby aspirin and lovenox + either prednisone, intralipids, Humira, or IVIG. He was really pushing IVIG specifically, but as I've said, he wasn't exactly instilling confidence in Will or me. (After the appointment, Will turned to me and said rhetorically, "Would you ever let him touch your baby if you had one?" Ah, no.) Honestly, I'm not sure if I'm willing to do IVIG. Apparently, you need 2-3 treatments (per pregnancy) at $3,700 a treatment - the first one of which is before you know if you're pregnant or not. And the treatment is collected blood products, which is also not thrilling. Combine all that with the fact that this is a very controversial treatment, and, well, I'm just not sure I'm signing up for it.

Needless to say, we'll be reviewing the literature.

Hmmm....so remember how I was wondering if going to this doctor might be opening a can of worms? Well, consider it opened. We'll see where we go from here.

To keep things stimulating, it looks like we ARE headed to Denver next week for the one-day testing on Tuesday. Flight booked, hotel reserved, rental car rented. We'll see what they have to add to the mix. This should be interesting...

Mo

Your endometrium is like a fruit cake...a slightly abnormal fruit cake

I finally connected with my RE to get the results of the endometrial function test.

Apparently, the biopsy results showed mild glandular abnormalities; i.e., the "fruit cake" of my endometrium is not looking quite as it should. Specifically, there was one marker present (cyclin E) that is only supposed to appear during the early secretory phases of the menstrual cycle (days 5-19), but in my endometrium, was present much later, during the time when implantation would occur. Which can negatively impact an embryo taking root.

My RE said the level of the abnormality was "mild" and so he says he is inclined to take the news "with a grain of salt." (Grain of salt on the fruit cake of my endometrium. Me thinks this is too many metaphors!) The cyclin E abnormality could be due to morbid obesity (except that I'm not overweight), or infection (not the case), or endometriosis (hey, I have that!), or stress (that too!). Since I've already had a laparoscopy this year to remove endometriosis, there is really not much else to do on that front. And stress, well...I'll do what I can, but it's ubiquitous, you know?

Bottom line, it's unclear what to make of the results, sigh. But the RE doesn't think we should give up on the old uterus just yet - or at least not because of these results. Again, I'm left wondering a bit why we did this test. But I guess the answer to that is to make sure there were no glaring abnormalites. And there weren't. My fruit cake was only subtly off, not grossly malformed.

So that's, I suppose, good news?

The Yale researcher who does this test has a twitter feed called placenta talk. The intro page has quite the graphics, if you want to click over. Who knew the placenta was, um, actually a little gross?

The immunology results we had drawn from the wizard are still outstanding, so we'll see what further murkiness that adds to the picture in a few weeks.

Meanwhile, Will and I will continue to mull and muse and sit in the trenches processing things. Which these days takes place on a mostly nonverbal level. Which is OK by me. For once, I'm out of logic, out of scientific notions, out of problem-solving ideas. Just plumb run dry of everything. So we're just going to sit here where we are for a bit, until we feel like picking ourselves up, dusting ourselves off, and trying something* again.

Mo

*"something" potentially being high dose IUI, IVF with CGH/microarray, donor egg, or adoption.

Meeting the miscarriage wizard

So we met Monday with the NYC reproductive immunologist, aka our miscarriage wizard du jour. And the meeting was, I thought, a little wacky, but I suppose not all-together bad.

The doctor seemed like a smart enough guy, from Australia I think (perhaps England, I always get that wrong). Very nice, VERY chatty. A little bit of overshare with the details on other patients, for example telling us more than I cared to know about someone else's miscarriage that morning and how it had set him behind on his schedule. "You know how that goes," he said knowingly, and um, yup, we do. As a psychologist, I also know how confidentiality goes. So I wanted to say, Zip it!

It felt throughout like the doctor was trying to relate to us simultaneously as peers and as patients, which was a little awkward. And hey, I just want to be your patient, you know?

He also had a tendency to assume major facts and not let us speak. At one point, early on, he said, "I bet I could tell you your whole history" and then proceeded to make several good but incorrect guesses. So he's barreling ahead with his fictional account and I'm saying, "Nope. Actually no. That's not what happened. No Clomid. Nope. No IUI, we went straight to IVF. Um, no, sorry, all the pregnancies weren't chemical, we've had a heartbeat two times" etc., etc. I wanted to say, just listen a little, won't you?

We hit a low point in the consult when he said to me, trying to cheer me up, "You know, you've been pregnant so many times, if you don't want to have children, I think you'll have to go on birth control! Don't you agree?"

And I looked him in the eye and said, "I agree that I'm likely to get pregnant again, but I don't know that I'm likely to have a living child."

And then he said, "Oh, you're right. Maybe not, but pregnancy, definitely."

Um. Yeah.

Throughout, the doctor drew many pictures and made reference to other alternative REs and immunologists (Sher, Sami David, Beer) and overall just seemed to really enjoy the process of talking to us. Or well, at least of talking.

I just wasn't that sold on the whole thing. Funny thing is, my husband Will told me afterward that he found the doctor rather endearing. Will seemed drawn into the doctor's zaniness, but meanwhile, I was moving from skepticism to downright irritation.

I noticed my increasing wariness and had to remind myself, that's not really why we were there. We weren't looking for a good primary care clinician or someone to build a strong relationship with.

We were there because this was a doctor who was willing to do testing no one else will do and so of course he's going to be a little iconoclastic. A tad eccentric. A little fringe, perhaps. That's sort of what we signed on for, isn't it? I told myself that perhaps I had gotten too used to the straight-up academic professional types. So what if the appointment seemed somewhat haphazard, slightly sloppy, a little bit like a clinical free-for-all?

So anyway, that's kind of the what's what about the appointment itself.

Here is a list of what the doctor ended up ordering:

Serum IgA
Serum Creatinine
Protein Z
PT/aPTT/Platelets
Fasting Insulin and Glucose
DHEAS
Mycoplasma/Ureaplasma
Antiphospholipid Antibodies
Antinuclear Antibodies
Anti-DNA/Histone Antibodies
Anti-thyroid Antibodies
Reproductive Immunophenotype
Lupus Anticoagulant
Anti-Sperm Antibodies
Antiovarian Antibodies
HLA-DQ Alpha Antigen
Leukocytes
TH1:TH2 Cytokine Ratio
NK Killing Assay

He also wants us to send the tissue slides from our second miscarriage to a placental pathologist for review. This is the miscarriage in which gross pathology was done but no cytogenetics were run (because the lab mistakenly discarded the sample). He said we may be able to determine if it was likely chromosomal this way.

And he had some blood and bacterial culture tests for Will as well, which I always like, because hey, isn't Will half of the equation here?!

As we were walking out the door, the doctor said, "Don't worry! Even if everything comes back normal, I'll find something to give you anyway!"

I'm sure that was supposed to be reassuring, but given the amount of money involved (not to mention blood...and time...and hope), somehow it wasn't. I mean, if you're going to give something to me anyway, couldn't we just skip all this expensive testing?

So we shall see. Will is much more open to this immunological stuff and to this doctor than I am, which is an amusing turn of events, given his initial hesitance. Time will tell. Results should be back in about three weeks. In the meantime, Will and I will continue to enjoy our "normal" lives, lavishing love and affection on our adorable Moxie.

Mo

Fruit cake and Endometrial Function Testing

So I went in to see my RE yesterday and had an endometrial biopsy done so the tissue could be sent to the researcher at Yale who pioneered the Endometrial Function Test (click the link to see him compare the endometrial lining to a fruit cake.) I've pictured my endometrial lining looking like a lot of things. But never quite like this:

The biopsy hurt, but not too badly (about the same as the coculture biopsy), and it was over in a minute or two.

The idea of this latest test is to get a sense of my lining and whether it is a receptive place for a little embryo to grow. So a snippet of my uterine lining is now winging its way to the aforementioned Yale researcher so he can look for things like the progesterone receptor, and mouse ascites Golgi mucin, and cyclin E (which shouldn't be there), and also to check and see if leukemia inhibitory factor, αvß3 integrin, HOXA-10, and p27 ARE there, because they should be. Got that? Me neither. Totally confused.

Apparently results will take a couple of weeks, so we'll see what said researcher thinks soon.

I have to say, I'm not holding my breath. Instead I'm moping around a little bit.

I do hope that something informative will come out of this, I really do. But at the same time, this is starting to feel a little bit like an exercise in the absurd. Know what I mean?

Mo