Thursday, April 25, 2013

Consult with RBA yesterday


I was so nervous yesterday. I think my blood pressure shoots up when I get nervous, because my head feels buzzy and I get a bit dizzy. But soon enough, the doctor called, and then I was able to focus on that and not my shaky stomach. My phone consult yesterday went really well! The doctor from this clinic was warm, funny, sympathetic, and very careful to answer all of my questions and provide extra information. Of course since this is donor egg, my interaction with anyone at the clinic will be pretty limited, but it's still nice to have liked my new doctor so much.

For the protocol, I'll be on Lupron (uggg) for two weeks (better not talk to anyone- or go out in public at all), and at the end I will start using the estrogen patches. I'll do a baseline ultrasound here at my old clinic, a few days before we go down to Atlanta.The baseline scan will check to be sure my ovaries are quiet and my lining is built up. Then, we'll hop in the car and head down to Atlanta. The day when they thaw the eggs we've selected, I will stop Lupron and add progesterone (he said Crinone is fine- thank god no more P shots). B will give his "sample" and then he's free to leave and come back to NC. We'll put him on a flight and I will stay in Atlanta with a good friend, and with the car so I can get around. On day 3 or day 5 (hopefully day 5), we'll transfer an embryo (or two). Then I can go home the next day. Pregnancy test as usual, on day 14.

And this is maybe the best part: no waiting 6 months to find a donor, since they're all frozen and waiting for me.  In fact, he said since I started my period yesterday (day 43 of my cycle.. sigh), I can start as soon as I want. If I pick a donor in the next week or so, I can start THIS cycle! That means counting to day 21 (today is day 2) and starting the Lupron. I'd then be on schedule to go down to Atlanta around the week of June 7, maybe transfer around June 15.

But, it could take another cycle (40+ days for me), if I don't see a donor I like right away. I should get access to the donor database in a few days... I will be obsessively checking my email till then! I won't rush it if I don't see the right donor, though I am eager to get this started. They add new ones every day, so I'm sure the right one will come along. I'm not even sure exactly what we are looking for... we've been discussing this at length, but I think some of it will just be the one that feels right to us. They currently have 55 donors and he described them as all "above average- in intelligence and appearance." Ha. Not sure about that, but I will be able to see quite extensive info on them, as well as childhood photos, so we can make our own assessments.

The doctor was so nice- he actually casually told me I have "post IVF stress disorder," but he said everyone who makes it to donor egg is pretty much in the same boat). We are paying almost twice as much for this clinic's refund program as if we just paid for one cycle, because we are so terrified that this final attempt still won't work. They have a 60% success rate (live birth rate) per cycle, and after two transfers, an 80-85% cumulative live birth rate, but we're still so scared! So we're doing the refund program, and he said most people end up paying way too much by doing this, but I just don't know.... it's scary to spend so much money, but we're also so scared that even with two perfect transfers, I could still be on the wrong side of statistics, you know? The refund gives us up to 5 cycles... which is probably way more than we'd ever get to, but it feels safer. I think. Maybe I am being paranoid? I can't tell anymore. I just can't tell.

In terms of disclosure, I'm still feeling very tender about all of this. We had the psych consult on Tuesday evening and it was helpful, but I just have huge fears of rejection, both by others and by my child eventually. We plan to tell the child the truth right from the beginning, but I've been limiting who we've told of this decision right now. After all, we don't even know this will work. I worry all the time about whether this is the right move.. I am intentionally separating this (potential) child from 50% of their genetic heritage, and creating a strange new reality for them to deal with. It's going to be interesting. I hope this becomes less of an issue when we are successful. I believe honesty is best for the child, but it should all come from a place of love. We loved each other so much and we love you so much, you were such a wanted child... I plan to read a lot more about how to think and talk about these issues, but I think I will be a good parent and we will all be okay.

As far as specific questions, I'll try to answer them as best as I can. Here we go:


Treatment plan:
·         Scratch biopsy or other prep? Mock cycle? Nope, not necessary
·         Progesterone/estrogen use: Vivelle patch/Crinone progesterone Yup, ok with any form you want- oral, path, shot, etc. I'll use my Vivelle patches and Crinone progesterone because I have leftovers, and found them both not too bad- the Crinone is gross, but better than relying on my husband to give me a shot each evening.   For the donor, he told me they use a Ganerelix protocol, with Lupron trigger. FSH only, most often. He talked a great deal about vitrification- how the eggs are dehydrated, put in ethylene glycol, then made cold (not frozen) with liquid nitrogen. It's pretty interesting, from a scientific perspective. 
·         Birth control pills used? nope- he said we can, but not necessary. either way, Lupron is used (though that can be optional too- but I'll just use it, it's not so terrible)
·         Lining check before transfer? yes- can do at my clinic around here before leaving


Egg bank questions:
·         Does database show how long the eggs have been frozen–the year they were vitrified? yes- in general, the donor # reflects how old the eggs are. if it's lower than 18, it's more than 1.5 years old. if it's 15-18, then it's from 2007 or 2008, or they might be a repeat donor. You can just ask the nurse if you want to know. I figure I'll be watching the database often enough to notice when new donors are added.       For other info- there are 45 donors (55?) and 900-1000 eggs available (16-20 eggs per donor, can that be right?).  He said to look really carefully at the family history. For example, there is one donor who is from a Ashkenazi Jewish background but it does not say that anywhere (her father is not Jewish). But if you read her profile, it says that for her mother and grandma. His point was, check their family history for additional important info on each donor. 
·         Does the length of time the eggs were frozen affect survival and fertilization rates?
·         Have all the eggs in the bank been vitrified in the same way?
·         Is there any risk of choosing eggs that have been frozen in an outdated or little-practiced way?
·         Have all the donors relinquished their legal rights to offspring? Yes
·         Can I ask if the donor is “proven” or is a mother—for each donor in the bank I am considering? They are making a new web interface for the database, which will show this for each donor. It will come out in about 4 weeks. Since I hope to select eggs before that, I can just ask the nurse and she can tell me.
·         I know live birth rate is 60/70%, but what is miscarriage rate after embryo transfer?
·         I am relatively young and would like a second child at some point. What are the chances of having leftover frozen embryos? Unfortunately, I did not really ask this question in an easy to answer way. But I can write down what he did tell me, during our discussion of the regular plan versus the refund program we are interested in (the "Frozen Egg Advantage"). He said to imagine a pool of 100 women using their egg bank. Of them, 80% get at least two high quality embryos from the 6 frozen eggs provided. Of these, 60% end up pregnant or 70% who use two embryos (with half of them getting twins for the double embryo transfer). Of the 40% who end up  not pregnant, 50% of them get pregnant using the other embryo. Overall, in two transfers of a high quality single embryo, there is an 80-85% cumulative pregnancy rate.       So, as I said, I didn't really ask this question very well, sorry. 
·         Does the clinic maintain contact with donors? Health status/issues if they come up for either of us? It's all anonymous. However, he gave me an example- in the late 90s, a donor gave eggs, and then later she committed suicide. Her sister contacted the egg bank. There was no family history, and it had been 12 years ago and the woman had gotten herself in "trouble" or made bad decisions according to the doctor, but the egg bank did contact all the families that had used her eggs to have kids and now had 12 year olds. They were not required to, but they let the families know. All kids are fine so far, no signs of any mental health issues, but the doctor said he felt that it was the right thing to do. So yes, they try to let people know if major things happen later.   Another note- he said that they limit to no more than 10 unique families per egg donor, so the amount of genetic children per donor is fairly limited.
·         Can you tell me about psychological screening done on donors, or health information on the donor’s family? He said they go through extensive psychological testing. They get 150-200 applicants a month, and select only 15-20. They want young women but evidence they are mature enough to go into this fully understanding. Most of them need the money for tuition. He was funny- he said they are all what you'd call "very nice girls." Um, okay. But I get his point. As far as other screening, he said they use GoodStart genetic testing. 
·         How many eggs will be unfrozen for me (I see the contract does not guarantee the two high quality embryos if part of the refund program)? Six. A full six. 


Logistics:
·         When do we pay the 30K? After you select the eggs. To reserve them.
·         What is the “Profile with $500 deposit,” and when do we pay the $500? In a few days- as soon as they contact me to see my profile is complete, all the testing is checked off. 
·         Follow-up (beta, early ultrasounds): no fertility coverage left, but go to fertility center for care? Or can a primary care doc do beta testing? didn't ask. I will just suck it up and go to my clinic here and hope they can code it as pregnancy and not infertility. Sigh.
·         Does guarantee include voluntary termination if it occurs? yes, and miscarriage. It's live birth that counts, for the refund program. 


Timing:
·         Timeline for how soon we can start- do we have to wait till day 20 of a cycle? I have 43 day cycles and just started one, so another 60 days? Can birth control pills used to shorten this wait? Can start on day 21 of this cycle if I select a donor in the next week or so!
·         When will new donors be added? Every day. Check every day. They get snatched up, sometimes in hours. Blonde haired donors disappear. We don't want a blonde anyway, but yes, I will religiously, obsessively be stalking this database.
·         How long would I have to wait between cycles if a cycle doesn’t work? Not at all. Can start again as soon as period comes. 

Next Steps:
·         $500, genetic waiver, consent forms? Because I have all the pre-cycle screening requirements in, all I have to do is wait. They'll contact me in a couple of days, I pay, I get the password. Yay!!!



2 comments:

  1. This is great information! Thank you so much for taking the time to post all of this. I'll print it out and go over it more carefully later.

    Did he happen to answer this one: Does the length of time the eggs were frozen affect survival and fertilization rates?

    That was a wild response to the question "I am relatively young and would like a second child at some point. What are the chances of having leftover frozen embryos?" It sounds like there's basically an...

    80% chance of getting 2 HQE out of one cycle.
    70% chance of pregnancy from a double-embryo transfer.
    35% chance of twins from that pregnancy (half of 70%)

    Am I understanding that correctly?

    I'm really glad that DH & I are delaying this a little bit to get married and honeymoon and that you and I are not going to be looking at the Egg Bank at the same time! That would be WEIRD. (: What if we wanted the same donor and one of us got to it first? I guess we'd never know, but still---how strange is that to think about!

    I'm thrilled that you can start as soon as possible. It will be so healing for you to get this show on the road.

    I sometimes think about the fact that we could most likely get the same result spending half the money (doing the HQE program instead of the guarantee) but then I tell myself that the guarantee program is an insurance policy and if it gives me peace of mind, less anxiety, strength, confidence, then it is worth it.

    Perhaps it'll assuage your fears a bit when I tell you that one of my best friends has twin daughters who are not genetically related to the father---they used donor sperm---and when they told the girls about their biological origins, when the girls were 7, one of them was fascinated and the other cried, but it didn't change their relationship with their beloved papa. They are intensely and beautifully connected to him, and finding out about the donor didn't change that one bit.

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  2. Glad it's helpful. We were on the phone for 40 minutes, but unfortunately I did not get answers to everything I had on my list. I don't know about whether the length of time frozen affects survival and fertilization. I did get the info about how to tell how old the eggs are- if lower than 18 for the first #s of the donor ID, then they are 1.5 years old or older. If 15 or below, they are from 2007 or 2008, or a repeat donor. But yeah, that's a pretty vague and unhelpful answer. Perhaps you can ask next week and let me know what he says?

    Yes, you've got the % mostly right. 80% of couples get 2 HQEs out of one cycle, and a 70% chance of live birth (which is different than pregnancy- that rate must be higher but he didn't tell me- I would be curious what the miscarriage rates are). The one that you had slightly of is that 35% figure. It's actually 50% twin rate if you do a double embryo transfer. However, is that a 5 day transfer or a 3 day? These are details I didn't get. I guess I sometimes get sick of all the numbers porn.. after so many failures when I should have had success, sometimes it all blurs together for me. But I do think it's important, and please do ask him (and let me know, if you can!).

    I'm glad you are delaying as well, since it's for such a happy reason. I do have one other online friend who is also seriously considering RBA and has her consult next week too, but I figure with 54+ donors and the numbers changing each day, and all of us desiring different things probably, we would not all end up wanting the same donor. Also I didn't ask how many mature eggs a given donor usually produces, but my guess is that it's more than enough for just one of us :)

    Thank you for the story about your friend. I know it's gonna be okay, and my therapist said most people forget all about their worries when they are pregnant and bonding with their new babies. I feel hopeful and confident this will be us, both you and me, soon!

    Good luck and have a nice weekend. I had a traumatic day but I will post about it later. It's just logistical stuff, nothing too exciting, and I am working on resolving it now.

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