Thursday, September 18, 2008

Consult 1 of 3

Berilac and I have decided that going back to our current RE after two rounds of questionable responses would be a bad idea.

So we have set up some consults with a few different RE's and see what their thoughts are.

Here is our schedule:
9/17: Dr. Mil.ki with Stan.ford Univ.ersity
9/22: Dr. Schoolcraft with CCRM
10/1: Dr. Zouves with Zouves Fertility

If you're observant, you'll notice that the first consult was yesterday. ;-)

In advance of the consult I created a few documents to try to minimize the effort needed by the Dr's to figure out where we've been and what we've tried. I have a spreadsheet of all of the tests we've done over the past two years ... there are 112 tests and counting. I didn't want to forward over all my test results and force them to sort it out. So I supplied three sets of documentation:

1. Summary of Patient History: with each step in this journey, identified by dates, I have a two page, bullet point summary on where we've come from and what we've experienced.
2. Summary of Infertility and Recurrent Loss Tests: I created a spreadsheet with Date, Name of Test, and Result, setting it up landscape in Excel ... it's 6 pages ... with a font point of 10. Yes, the testing has been extensive.
3. I printed out the most notable test results and provided those: Ultrasound results from the miscarriages, Negative Fragile X test results, CD3 FSH values, Chromosome studies, and the like.

The first thing Dr. Mil.ki did was to thank me for the thorough and comprehensive documentation!! (I was a bit concerned about this, concerned that I would get sort of made fun of ... but he was grateful to be able to quickly and easily see my history.) Yay for being an overachiever!

Getting down to business, he told me that the protocol I was on at SIRM (LA10E2v, also called Estrogen Priming Protocol, also called AACEP) is attempted on 1% of the infertile population, that only the SIRM clinic uses a protocol like that one, he went on to explain the three more common types of protocols: Long Lupron, Antagonist, and Micro-dose Flare. He slowly and carefully explained how each one worked and which ones they used for which patients. He suggested trying either the Antagonist or the Micro-dose Flare for my next cycle.

He did not knock SIRM at all. He did say that usually women are put on the protocol I was put on only after other protocols didn't work for them. He also said that SIRM is a very successful clinic, but I'm welcome to cycle at Stan.ford if I wanted to.

He wanted to know as much about the polar body biopsy and CGH testing as I could share - it's very cutting edge. He affirmed our decision to do egg testing for our moral reasons and was very impressed with what he's seen with CGH testing and egg vitrification.

About midway through our discussion he apologized for all that we've been through. He affirmed how much I know about this process and how unfortunate it is that we have the history to give us this experience ... this experience that nobody wants. And he asked me, given all of my knowledge of the latest and greatest technologies, if I wanted to lecture to his fellows! (ha! ... though I briefly considered it ;-))

At some point during our consult he mentioned CCRM (I think it was when he was talking about how great CGH and egg vitrification are proving to be) and he asked me if I was considering having a consult with them? I told him I have one with Dr. Schoolcraft on Monday. He said that they are the best clinic in the country and therefore - in the world. He said that they have the highest success rates of any clinic (which I already knew) and he said that he attributes 10% of their above normal success rates to them "cherry picking" patients (which I've heard, but I've also heard to the contrary) and 10% to their extraordinary lab. (Which I had also heard, but it was nice getting affirmation from a doctor outside the clinic.) Dr. Mil.ki told me that if I have insurance coverage, the financial means, and the ability to travel that I should go to CCRM. He said he'd be happy to be my RE, but CCRM will give us the best chances. I have never heard a doctor recommend another clinic like that before.

During our consult, along the way, a couple of times he dropped the phrase "in the study we released in 200X we found that ..." it was reassuring to know that this guy is actively leading research efforts.

The last piece of our appointment was to do an ultrasound and check out the goods. He went through and explained every last thing to me - much more than any other RE has done. My favorite part of having my feet in the stirrups ... not that there can be a favorite anything when you're compromised like that ... was when he said "Wow, those are some beautiful ovaries you have" (yes, Berilac was a bit concerned that it was a come on!) ... he told me that he would put me on a Follistim dosage of 225iu/day ... at SIRM I was on 750iu/day ... quite a difference, don't you think? For those of you that understand this ... my antral follicle count was 16. That falls into the category of "normal" ... not low ovarian reserve.

So at the very end of the consult I said to him "Ok, doctor you have suggested protocols to me, told me my ovaries don't look old, have been encouraged by my response to medications and my ability to get pregnant ... but you haven't said anything about donor egg ... give it to me straight doc, are you telling me you're not going to give me the donor egg speech?" ... he laughed. His response: "Not at all." He said that there's other stuff to try (how much more trying we can do, is something we have to pray about and discuss) but he was very encouraged that we would be able to have biological children. He said youth is on my side ... he said I looked very healthy and if he saw me draggin a back pack out on the main street wearing sweatshirt and jeans, he'd think I was in high school! He said my ovaries look almost as young.

I'm always a skeptic though! (as I've mentioned in previous posts) ... all RE's think they can do better than the last. It was nice to get positive news, but I'm trying to keep everything in perspective and take each step and day as it comes.

38 comments:

  1. Regardless of what other REs have or have not done, I hope the next one is the one who holds the magic to help you achieve your dream. The point is, you still have options, and I hope one is THE ONE. Good luck and many {{hugs}} for you.

    By the way - way to be an overachiever. You rock, Girl

    ReplyDelete
  2. Suggestion, make sure they used the correct Fragile X test. If they didn't do a Southern Blot with PCR analysis, or it may have been called the FMR1 DNA test, they may have used an old test that has proven unreliable.

    If they did the right test they should have given you a CGG repeat count for both of your X chromosomes.

    ReplyDelete
  3. I can't wait to hear how the other appoitments go. I hope they are all as positive and that you can "cherry pick" your new RE instead of visa versa.

    ReplyDelete
  4. To the anonymous who suggested the specific fragile X test ... thank you! I looked into and my test says: Interpretation: The status of the Fragile X locus (FMR1) for this female patient was determined by both Southern blot and PCR analysis, using DNA isolated from a blood specimen. This patient carries two FMR1 alleles in the normal size range, both with 28 CGG repeats. A normal, female pattern of methylation was observed for the FMR1 gene.
    These data are consistent with a normal genotype at the Fragile X locus. Therefore, this patient is predicted to be unaffected by Fragile X syndrome, and not at risk for having children affected by this disorder.

    Looks like they used the more up to date method.

    Thank you again for your suggestion!!

    Polly

    ReplyDelete
  5. You are on a roll with these consults. Sounds kind of exciting in a mass-information-gathering way. I just think great things are going to happen for you guys as you select your next option.

    Congrats on the sexy ovaries!

    ReplyDelete
  6. I love it that you are so detailed, which goes to show that you're such a fighter. Though I'm not from the States, but I have heard about CCRM from the rest of the girls and it does seem that they are the best.

    I'll be praying for you that you pick one that suits both of you best.

    (((((hugs)))))

    ps Don't you love it when people tell you that you look young? I look young too. In the past, I used to hate it when bouncers asked for my ID at clubs. But when I went back home for X'mas and went out with the girlfriends for some partying, I was asked for my ID and I can't tell you how happy that made me! To be asked for my ID at 33 years old in a club to check my age, makes me one very happy YOUTHFUL girl. hehe. :)

    ReplyDelete
  7. From one overachiever to the next, I would expect nothing less of you, my friend. ;-) We could organize a small country.

    Great news on the first consult! You should talk to the fellows! I'm eager to hear your decision and where God leads you. You're always in my prayers. ILYMF

    ReplyDelete
  8. Wow, Polly!! What an encouraging appointment!! I am impressed that he recommended CCRM. That just doesn't happen often.

    You have a great schedule for consults and I hope between them all you are able to gain some hope and decide on your next steps.

    I love the spreadsheet idea. My whole life and fertility history is in Excel. I just had never considered sharing them with my docs. Nice job!!

    Great AFC too. I am just so happy you had such a great appt. Keep us posted on the next ones too. (:

    ReplyDelete
  9. Very impressive documentation! I wish you the best of luck on finding the right RE for you.

    ReplyDelete
  10. This sounds like such an encouraging appointment.. I hope it brings you all the joy you've been long awaiting.

    Got to agree with the young looking thing, its always such a confidence boost.. I got asked for ID to buy alcohol 2 years ago - when I was 38! And a few months ago a bus driver said I was silly to tell him I was over 25 when he asked - I could have had the cheaper fare!

    I'l continue to watch here and hope you have more inspirational Dr visits with great advice to come.
    *hugs*

    ReplyDelete
  11. This was by far one of the most useful posts I have read. What a way to keep perspective.

    And I love the spreadsheet idea! I can't believe I didn't think about it ... I love spreadsheets and it seems perfect for summarizing all this crap. I'm starting on mine this weekend.

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