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

More Hallmark rejects

Decision made

Thanks for all of your thoughts and opinions and reasonings on whether to see the reproductive immunologist or not. Very, very helpful.

After much deliberation, Will and I decided we will see him on Monday. We're not really expecting a whole lot, except a $1,000 bill for the consultation, but we figure we'll give it a try and see what he has to say anyway. If we decide to do the testing, that's another $700-$2,000 and then the follow-up appointment is another $500. Ugh. We hope for all of that, he has something useful to add to the mix, and we've decided to take the chance that maybe he will.

Talking about this, we also came to the realization that when we think of reproductive wizards, the person who repeatedly springs to mind is the clinic director in Colorado. So we are going to try to gather our emotional and financial resources and make a trip out there this fall for the one-day work up. That's the plan at least. In the past, when we have planned this (twice), we have gotten pregnant. Which would also be a very fine outcome.

So there you have it. Update to come, both on the immunologist visit and the pending results from the endometrial function test.

But first, check back Monday for the next installation of Hallmark rejects...and let us know if we're on the right track.

Mo

Opening a can of worms? Upcoming miscarriage doc appointment

We have an appointment with a reproductive immunologist in New York City on Monday. Perhaps he is the miscarriage wizard we have been seeking.

Or perhaps not.

I made this appointment back in August, right after our fifth miscarriage (yes, this was the first available). I then promptly forgot about it. And now it is here. And I'm not sure what to do.

I have been doing a lot of research on immune issues and pregnancy and am finding the scientific evidence is as clear as mud. It's very controversial, so much so that many of these immunological tests are not run in academic centers (we've had the ones that are: APA, thrombophilia stuff, thyroid issues. all normal).

Sigh.
It is hard to tell if seeing this doctor will be part of looking under every stone and possibly finding a solution to at least part of our problem. He won't be able to fix our chromosome issues, but if there's also an implantation issue, then maybe, just maybe he could do something to help.
On the other hand, maybe his controversial treatments could actually make things worse. (Worse! Ha! Hard to believe, but I'm sure it's possible.) Just to recap, we know that three of our losses were due to wonky chromosomes but the other two...not so clear...and we also had three failed IVFs...some of them with crazy numbers of embryos transferred, which maybe didn't take because they were all abnormal, or maybe didn't take because we have some other implantation issue.
And of course there's the small issue that this guru guy doesn't take any insurance, so we'll be shelling out a decent amount of cash to see him and for the testing and then to see him again to hear his opinion on the testing.
My husband Will and I have been on a much needed puppy-induced hiatus from thinking and talking about infertility/pregnancy/etc. But if I'm not going to go to this appointment, I'll need to cancel it, probably by tomorrow. Will and I have gone back and forth on it and have struggled to come to a decision. One of Will's concerns is that seeing this physician will just open up a can of worms (as he likes to put it), where some vague problem will be identified (e.g., elevated natural killer cells or antisperm antibodies or DQ alpha whatever whatever that suggest using IVIG or intralipids). Things that we won't know exactly what to do with or their significance, since the research is scant, contradictory, and often poorly excuted. And that this might just leave us back where we are. Or at an even worse place then where we already are, filled with greater doubts and anxieties than we currently have, and still no clear path.
I hear that. I'm not interested in a can of worms or a wild goose chase, or a bunch of geese chasing worms, or, well, you know what I mean. But I am also a fairly die-hard information seeker (which I'm sure comes as no surprise to regular readers).
So, Blogworld, what do you think? Should we go ahead and go? Or not go? Please chime in. I'd like to hear all of your thoughts. I am especially interested to hear what you think if you come from a medical background or have any experience/knowledge of the more controversial immunological stuff.
Don't worry, we'll ultimately make our own decision, but let us know, what would you do? And why?
Mo

Introducing Hallmark rejects...by Mo and Will

Inspired by the miscarriage e-card Mo found last week, we have decided to begin an occasional, off-color series of loss and infertility "cards," created by us. Who knew coming up with these could be so fun? Feel free to let us know if we take it too far.

Mo and Will