Thursday, September 25, 2008
Well I found out yesterday that Dr. Zouves would like me to release all my 100+ medical records to his office (read: require my previous clinics to gather and fax over all 100+ test results to Dr. Zouves) and this would be required for just a 30 minute consult, whose intended purpose is providing me with enough information so that I can decide if I want to become a patient ... so he's requesting all of this before I decide to become his patient. Yeah, I don't think so. Did he not get my overly helpful patient summary along with copies of the 20+ most important test results? What more could this guy want? (haven't I shed enough blood? ... get it? blood tests? shedding blood? ... I crack myself up)
So instead we will do a consult with Dr. Sher at the Sher Institute (SIRM) he's the big cheese at SIRM. We have cycled twice now with the Sher Institute, but it's not been with Dr. Sher himself (he has many doctors working in his clinics across the US)
We respectfully told my current doctor that we are certain we do not want to repeat the protocol from the last two less-than-successful cycles. If all we're risking by changing protocols is 2 eggs ... then heck yeah, let's change protocols.
So my next post about the third consult will be from Dr. Sher not Dr. Zouves! I tried throwing a fourth doctor in there - Dr. Owen Davis from Cornell, I figure if I'm seeing the top 3 doctors in the country might as well see the top four!! What's ganna stop a determined gal like me? ... well, my insurance (crap sack that it is) wouldn't cover the $500 phone conversation. So, yeah, that's a no-go. I think three consults is plenty.
The ol' switcharoo ... one minute you think I'll be telling you what Dr. Zouves says, the next minute you find out I'm telling you what Dr. Sher says.
This little game of musical chairs is too much fun!!
Tuesday, September 23, 2008
My husband just got a new job last week and we were so excited to find out that the Insurance was Cigna (well known in the infertile communities for providing insurance coverage) so we asked for more detailed information ... and that too looked very promising. It wasn't until today, when we got the breakdown of coverage, that the bubble was burst.
The first document, under the "infertility" portion: in-network coverage 90%, out of network coverage 80% ... I was getting SO excited!
Then we learned that the 80 or 90% coverage is for everything else EXCEPT medications and/or IVF treatments .... Gee, thanks. That's ... helpful. What's the smilie for blowing a big fat raspberry?
(best I could come up with)
Monday, September 22, 2008
Dr. Schoolcraft was not as optimistic as Dr. Mil.ki ... not sure that's due to his personality or his skill. I'm hoping it's the former.
Here's what it boils down to:
- They generally don't do the PBB on just the eggs and freeze the eggs, but they would be willing to do that for us. (Typically they do the PBB1 on the egg, then fertilize the egg then do a PBB2 on the fertilized egg, then freeze the fertilized egg.)
- He suggests genetic testing on eggs because statistically I'm more likely to have aneuploidy babies.
- He said he would change 4 things about my current SIRM protocols: no Lupron, no BCP's, no estrogen priming, and no Luveris.
- He made an excellent point (that I've been trying to deny in all of my denial) ... my low AMH level, along with my high FSH, along with 4 miscarriages (where two of which were proven chromosomally abnormal) fit into diminished ovarian reserve and/or "an egg problem" however, my elevated antral follicle count of 16 does not. He believes that there really are only 5-6 eggs retrievable for me each cycle ... regardless of my almost 20 growing follicles.
- Donor eggs would be an excellent option for us if we're tired of going through these cycles without having a baby.
Basically he said that he'd know more about protocol and how to proceed with us after learning the results of the day 3 blood work, CCCT, and a 1 day work up.
Berilac and I are likely going to head to Colorado to do the 1 day work up, we would have more information that way. They would be able to tell us which protocol they would use and if they think donor egg/embryo is our best chance.
Pray for us as we try to follow God's leading in all of this ... that is our hearts desire.
Thursday, September 18, 2008
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.
Wednesday, September 17, 2008
Tomorrow is uncharted grounds. Ever since we started trying I've always had a failed estimated due date in front of me, since we've waited so long to try (last time we tried was January 2008) we haven't had the "opportunity" to have another miscarriage.
Missing my babies today ... wondering what tomorrow (and the future) holds.
Thanks for all your support and love.
Thursday, September 11, 2008
Monday night Berilac and I went to a Stan.ford Univ.sity Fert.ility Clin.ic symposium called "Options for building families" ... I've known about this recurring event for at least a year and have been avoiding it ... until recently.
Let me just tell you that I NEVER would have expected to see myself in a meeting like this ... I just never would have guessed.
The counselor at the clinic knows me by name ;-) and she invited us (along with a lot of folks) and we finally decided to dip our toes in, check it out.
It's scary to check something like this out because it feels like you're giving in to failure - the enemy has won. Well, that's what the enemy would like you to think! But it's so entirely not true.
So as we understood it, the meeting would consist of many representatives sharing their stories around alternative family building. They did a great job coordinating the presentation - all were represented, below is a list of the types of situations that were represented (and I'll add in definitions for those that don't understand this stuff!)
- donor sperm: wife's egg, sperm not from husband - but rather from a donor, wife's uterus.
- donor egg: egg not from wife - but rather from a donor, husband's sperm, wife's uterus.
- donor embryo: egg nor sperm from wife or husband - an entirely different couple created an embryo, wife's uterus. (this is like adoption only rather than adopting a baby who's days/weeks old, you're adopting an embryo to transfer into your uterus in hopes that you carry the baby to term)
- surrogacy: most traditionally - wife's egg, husband's sperm, uterus of a woman other than the wife.
- (and combinations of the above!!) for example a couple could create an embryo from a donor's egg and the husband's sperm and transfer it into the uterus of a woman besides the wife. (did you follow that?)
- domestic adoption
- and international adoption
I was mildly hyperventilating when I walked in, but I was shoutin' from the rooftops on the way out (so, I guess you could say that their goals were met? demystifying alternatives for seeking couples.)
Among the cast of characters were:
- a birth mother who gave up her child and now enjoys an open adoption
- a father who adopted domestically
- a woman who went through 11 failed IUI's followed by 7 failed IVF's, and now has two children from surrogacy (she now runs a surrogacy consultancy for those of us who like to do it ourselves!)
- a woman who adopted her oldest son and had her second son via embryo donation (she now runs a surrogacy placement agency)
- the 17 year old son of the woman mentioned above - he's the result of the donated embryo (was TOTALLY cute and bright and well spoken - an inspiration for embryo adoption!)
- a woman who lost donor egg twins at 22w gestation due to severe pre-eclampsia, who now is the mother of donor egg, surrogate triplets.
It was amazing.
The three things that Berilac and I got out of it ... and the three things I want to share are:
- God created most women to have a motherly desire - you will not be happy replacing that desire with a successful career or world travel ... when it all comes down to it, unless taken away by God that desire is there to stay.
- No matter how you build your family - you think you have the best kids in the world, hands down - no doubt.
- The overshadowing darkness that infertility brings will go away. One of my biggest fears is that the roots of bitterness will grow deep in this journey and it was so reassuring to see so many women (almost flippantly!) briefly mention their 11 years of fertility treatments only to spend WAY too long going on and on about their kids (who were wonderful 99% of the time and kids 1% of the time - so they were honest too!)
If we decide to go the non-biological route ... there are options, and based on some preliminary findings - they don't look too bad.