Thursday, October 8, 2009

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
Fasting Insulin and Glucose
Antiphospholipid Antibodies
Antinuclear Antibodies
Anti-DNA/Histone Antibodies
Anti-thyroid Antibodies
Reproductive Immunophenotype
Lupus Anticoagulant
Anti-Sperm Antibodies
Antiovarian Antibodies
HLA-DQ Alpha Antigen
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.


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  1. He kind of scares me but if he is able to find things out that will help you I would give him a try. I like the fact that your husband likes him, that doesn't happen very often. Let's take that as a positive sign. God Bless. ((HUGS))

  2. Holy cow. That sounds rather, um, traumatic, actually. Everything else notwithstanding, a miscarriage doc should maybe be a bit more understanding of the fact that pregnancy does not necessarily equal child!

    Hmmmm. Looks like an awfully thorough run down of tests, which might get interesting. Here's hoping (hoping? What the hell has this world come to?!?) that he finds something treatable for heaven's sake.

    *sigh* Sorry it wasn't easier, and that you weren't able to get a good "feeling" from him. Might not be the most important, but it's nice being able to believe that your wicked-expensive specialist isn't a total nutter...

  3. Wow, kind of overwhelming for sure.
    You could get insurance to cover a bunch of those tests through your regular doc, or through an endo or something if they're charging you an arm and a leg...I'm just suggesting. I hate that everything related to IF is so freakin' expensive.
    Hugs to you and Will.

  4. Moxie is adorable.
    Hmmm... reminds me of my current RE who my DH loves and I am a little uncertain of - he was shakey on my details, and did a lot of what you said - but - after a few visits i discovered that he is a nutbar and a genius, cutting edge, did things other REs would not dream of doing, pushes the envelope - but gets results and in hte end that is what we want.
    hope the tests turn up something for you.

  5. Gah -- I'm irritated for you! I hope that his interesting bedside manner translates into some answers but, well, just GAH!

    Sorry about all of the tests. They never seem to get any more fun, do they?

  6. My husband has Buerger's Disease. It is commonly accepted that there is not only no cure but nothing even that can slow or diminish the action of the progression of the disease. I mean, my husband HAD quit smoking. But we wanted to keep more of his foot from dying and avoid the amputation.

    My husband's parents are both doctors. We saw specialists on top of specialists on top of specialists. Even spent $7K just for a one day consult at the Mayo Clinic. No one had anything for him.

    And then we went to see a doc who had never seen or treated a Buerger's Disease patient before. But he was very highly recommended by a different doc who FIL trusted. This guy was super zany. Two whole walls of his office were plastered with pictures of himself, his patients, places, whatever. He talked fast and told jokes and was just, well as eclectic as could be. And then the location of the office - it was on a little corner of an otherwise abandoned floor in a small, not-modernized hospital; almost like he had been left behind.

    Both of my husband's parents disliked the guy off the bat and thought all the crazy tests he was running were useless. I loved him. He was obviously brilliant. And an out of the box thinker. And the box wasn't helping us.

    Fast forward 4 years. He isolated the gene for Disease and the resulting amino acid complex deficiency. Or at least he thinks he did. His initial paper was published. We'll see what his trails show 10 years from now. Now obviously this discovery came too late to save my husband's foot. But even so, in just a few years he and his tiny staff of a half dozen people seem to have made more progress on this malady than all the rest of the medical field in the decades since it has been described.

    Maybe your zany doc isn't like our zany doc. Maybe he doesn't have the answers. But maybe he does. You won't know until/unless you give him a chance to try to figure it out.

  7. Wow he sounds a little strange. After all those tests i really hope you get some answers!

  8. Ugh... frustrating. Some doctors are really socially inept, but actually quite good at what they do. I hope this is the case for you.

  9. Seriously with the confidentiality thing! That would make me worry that he was sharing my story with strangers as well.

    I've had some of those tests. I'm sure you have too. But some of the other ones look intersting.

    My husband is in pathology and says that placental pathologist is really an obscure specialty. Who knew!

    Thanks for keeping us updated. This is very interesting. I certainly hope you get some answers!

    I really hate that they can't pinpoint what our problem is. I know how frustrating it is.

  10. Um, are tasers legal where you live? I really, really think he could have used a blast or so.

    Lots of testing - I hope that it proves to be useful.

    Thinking of you.

  11. Hm, sounds like a bit of a dick really, if he didn't get you (especially as an educated professional who's done a lot of research on recurrent losses and has consulted other specialists already) to just tell your story straight up. I'd have been irritated no end too.
    DH told me I was talking way too much during our IVF consult. Kept interrupting the RE to blurt more info out. I also wrote my own referral letter to the RE who specialized in recurrent miscarriage so that I'd be sure he'd have _all_ the info on what had already happened to us. I'm sure it made his consult letter a heck of a lot easier to write! I hope you get some answers from all that bloodwork!

  12. Wow, you are polite. It drives me crazy when people talk at me instead of with me. The confidentiality aspect would have definitely made me hesitant. However, despite the wacky appointment, I'm hoping that you get some answers. Maybe the book is better than the cover. :)

  13. I don't know about this guy. Looks like the same tests Sher would have sent you for. I wasted money on all the same tests myself. Makes me sad since I could have had a nice Bernina for quilting instead. Hindsight. I hope there is something that can be fixed for your sake.

    Also... you need to post more of Moxie's baby pictures. She is too cute.

  14. Moxie ... what a love!

    Er, I think I'd have walked out. The specialist sounds dreadful. I hope his value turns out to equal -1*(his manner) because ... yuck.

    Perhaps there's an inspiration somewhere in his manner for another card?

  15. I too did a lot of those same tests with my first IVF. That doc seemed to give it a lot of attention. My current doc seems to think there's not enough research to back up the fact that any of those tests have any bearing... she told me today that they are just "smoke and mirrors; something for people to grasp onto". Well, that's information that would have been more helpful a FEW THOUSAND DOLLARS AGO! But whatever, every doc has there own opinion. It's just frustrating...

    I really hope your testing gives you some insightful, positive answers. Good luck to you.

  16. I am so sorry the doctor was annoying! I am still really hopeful that they will find something new with all of this testing.

    My RE wears short sleeved dress shirts with a tie. He speaks a mile a minute and repeats himself constantly. I find it annoying as hell! Supposedly he is the best in town and is "brilliant".

    I guess I will find out after this cycle. Right now I see him as an overpaid used car salesman!

  17. Ummm.... sounds like it was "interesting" to say the least:).

    I was hoping you would have an instant connection and he would have a flash of genius, isolating the cause and cure of your recurrent miscarriages. *sigh* Magical thinking, I suppose.

    Still, I'm hoping there is a valid reason for his super-expensive fees and he comes up with a new direction for you to consider.

    Wishing you luck...

  18. I have a lot of kooky colleagues, I've learned to look beyond it a bit.

    Not that anybody should be so cavaleir about recurrent loss.

    Regardless, I do hope that you get an answer.


  19. By your description, I'm going with Australian :) In my experience, the English are usually not very forthcoming and open :)

    I do think geniuses are very weird to us normal people so hopefully that's it. And it's results you're after not a good bedside manner, although it does help that Will likes him.

    Oops, that's Connor screaming! Bye!

  20. Ah, boundaries. Isn't it amusing/frightening to witness other professionals with such permeable boundaries? That and listening skills. He must of missed that class in med school.

    Well, like I've said before, see what data points he brings back, then do your own critical review and re-evaluate. I'm sorry it didn't go more smoothly though.

    Kisses to Moxie!!

  21. Apologies for not being sure of this -- but have you ever read the book "Is Your Body Baby Friendly?" It was written by two of Dr. Beer's patients (and him). It is informative and gives you an idea about some of these tests. I did the immuno testing after my first failed IVF -- if only b/c I had six prior failed IUIs and it was impossible to try on our own.

    That said, while my numbers haven't shown any immune issue (thankfully) I found a truly phenominal (sp?) yahoo group that was referenced in the book:

    They were imensely helpful in explaining tests, setting expectations, and sharing knowledge. I just wanted to recommend it as a resource. Best of luck to you.

  22. Wow, sounds like an interesting guy to say the least. I so hope you get some answers from this round of tests. Enjoy little Ms. Moxie...dogs are the best!

  23. Wow. Um. Maybe he's one of those people that is so smart he completely lacks any common sense or the ability to communicate adequately with others? Um. Do those people exist? I am shocked that anyone could be so nonchalant about recurrent jaw dropped.

    Of course, even in the Wizard of Oz, like in your picture, I expected the wizard to be some huge all powerful magical god...and he was just a little man behind a machine.

    Hoping you get more knowledge from all this...

  24. You are much stronger than I love. I would of said something harsh back to him. He doesn't seem like the brightest tool in the shed when it comes to feelings. Wow! What a crazy appointment.

    I at least hope they find the issue and can get it taken care of. I'm always thinking of you guys. Praying for you too.


  25. Holy shit! Sounds like it was quite an appointment. I'm like you - I would have been irritated by his assumptions. I guess the important thing is if his wizardry is good enough to figure out WTF is going on. Continuing to keep you in my thoughts. And lots of luck with the testing.

  26. wow. that's a lot to take in. i really hope that he does find something, though, you know? i tend to be a little uncomfortable with providers that just talk and talk. makes me suspicious of something for some reason. i'm glad will likes him though!


  27. Hi, First of all, I am so sorry that you have had to go through all this. It sucks, I know. But your cards do make it better. They're awesome!

    I just wanted to reassure you that you really are working with a phenomenal RI (and he's actually South African, not English or Australian : )I too have suffered through RPL, 15+ in 8 years, seriously, I stopped counting. I too am married to a medical professional and am also in the medical profession.

    I understand why people might question your RI's fee's, skills, research, ability to help you. It is definitely a field that thinks outside of the box, and there isn't a lot of reserach because who would be willing to participate in a placebo controlled, double blind, randomized cross-over study in fertility? Ethically that would be really messed up! But that is the gold standard for research, so instead of research studies professionals in this field rely on past patient statisics. And the evidence strongly suggest that there is a percentage of the population that this works for. These are usually the patients that the RE's write off because we mess up their statistics, and because it's just way too much work.

    I can tell you that I have spent the last 12 years working with fertility patients and I have referred many of them to this doctor, and many of them were skeptical. But I have seen him do miraculous things. It doesn't work for everyone but I have a very large photo gallery of babies that are here today because of his skill. And my only regret in the fertility world is that I didn't go through IVIG. It works. Yes, JS is a bit of a nutty professor, but he is also one of the most compassionate doctors I have ever had the chance to work with personally or professionally. And I know most of the RE's in the Northeast.

    I know you have concerns, but you really are working with one of the best physicians in the country. I hope that he can help you to have the healthy, full term pregnancy that you dream of, and your definitley deserve. All the best.


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