Monday, November 7, 2011

Should I stay or should I go?



Thank you guys for your thoughtful comments - it really helps to read your take on our situation, your encouragement, and your questions. We appreciate it.

One of the questions you so thoughtfully asked was about whether we might want to leave the Denver clinic, since they are so stringent in donor screening and gestational carrier screening and preparation.

That's a good question.

Part of me is glad that if there is a chromosomal problem with the donor we wanted to use that we found it, and part of me is frustrated, since the finding is of unknown significance. But knowing what we now know, we wouldn't want to go with her without screening the embryos. And apparently, the CCS testing cannot pick up this problem (one thing we considered was seeing if we could go forward and just discard the affected embryos). Denver won't let us so it's a moot point anyway, and no other clinic we know of can do the CCS testing - even if they did, starting over from scratch with a new clinic would take a lot of time and $$$.

But going forward, the question remains: Would we maybe want to go with a different clinic?...tempting.

The problem is, the Denver clinic's stats are so darn good.

Here is a link to the top 10 egg donor clinics in the U.S. Denver is number 9 (lower than I would have guessed). But they also have a much larger sample size, so I trust their numbers more than some of the other clinics listed (and besides, they are still the closest to us of those listed...)

But really, maybe many other clinic's numbers are so close that it doesn't really matter significantly, right? So we looked in to this...There are two clinics in NYC we would consider, our old clinic and one other very reputable clinic. Our old clinic's success rate is 12% lower than Denver's (plus they don't vitrify embryos, which is really a deal breaker). The other NYC clinic's success rate is 8% lower (not as bad, but truly significantly lower, plus, we'd have to basically start over, which is expensive and time consuming).  Also, have you noticed how unlucky we are? We sort of think we need the stats as much in our favor as possible.

I also looked into the best clinic near where my sister lives in case we go in that direction, since it would make her life so much easier if we kept things local for her. Sadly, the best clinic where she lives has a success rate that is 20% lower (shocking!! I'm a little embarrassed for them, actually). No way we could do that.

Based on all this, at least for now we're thinking of staying. Not totally happy with this, but don't see a great alternative  either. I want to move forward as quickly and successfully as possible. I am beyond frustrated. I can't believe how difficult this is, how mired our situation feels to me.

In terms of alternate paths, we are anxiously mulling transferring some of our normals to me...so more on that soon. This scares us though, as we really don't know if I can carry or not, and at almost 40 now, I may not be able to replace those embryos (not to mention that I don't have the psychological stamina left to do more IVFs). I would hate to throw such carefully acquired and irreplaceable embryos in my old death trap uterus if there is no chance at life there, you know?

So that's where we are today, although things change frequently around here. We have emails in to the Denver clinic to find out more about the process/screening requirements involved in a sister donation and to find out the password to the Denver in-house donor pool (it would be great if we found someone suitable, although I'm not so optimistic about that since there are less than 60 women in the pool). Call also in to a psychologist for Will and me to talk to about the emotional complexities of a sister egg donation versus using an unknown donor. We want to be thoughtful about this decision, or at least screw up our kids thoughtfully, you know?

Everything remains unclear, but damn I'm trying to move forward anyway.

Mo

P.S. Guess what percentage of donor applicants passes the screening process at Denver? ...if you leave your guess in the comments, I'll post the answer soon. I think you might be surprised - I was. Known donor screening is different apparently (thank god!!), so hopefully not as steep of a hill to climb. Major kudos and a shout out to the closest guesser!


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22 comments:

Nikki said...

Maybe 5% pass screening?

Pie said...

I'm gonna go with 25%. Maybe as high as 35%. Not more.

Yeah, it is hard to walk away from those stats. I totally hear you on that. There was many a time, when doing the whole long-distance treatment, that I wondered, "What if?" But then I'd look at those stats again, and well the rest is history.

I wish you both all the best as you navigate this new decision.

gwinne said...

Yeah, I hear you on the stats thing, though I also recognize how flexible any of those numbers are. For instance, I looked into AFC of Chicago (#5 on that list) but was highly encouraged to transfer ONE, which brought that lovely number down to 55% or something I deemed unacceptable. My own clinic isn't on there, probably because of the low numbers of actual cycles done, but fits within that 70% or higher framework; I'd guess there are many smaller/newer clinics in similar situations.

In the end, there are so many incredibly personal factors that go into these decisions.... for me the difference between roughly 70-75% and 75-80% just didn't matter as much as cycling at home with a doctor/staff who had seen me through 2.5 years of cycles and sorrow. I didn't see it at the time, but the odds at any of these top ten clinics (or their peers) is astonishingly good, you know?

I wish all of this were easier. And I am rooting for you, no matter which way (or where) you go.

S said...

We cycled with donor eggs at San Diego Fertility Center, and in our initial consultation with them, Dr. Hummel told us that they turn away around 80% of applicants to their donor pool. So in regard to what percentage of donor applicants CCRM accepts, I'm going to guess it would be similar, around 20%.

(Dr. Hummel also shared with me that, even if I were young enough and had a low enough BMI--I'm 40 with a BMI of 35--I'd be declined based on my family history of heart disease and diabetes. Talk about another blow to the ego! LOL)

newbie said...

Mo -
I am just catching up on blogs having been away for a week. Man oh man, I am pissed that more roadblocks are being thrown in your path. You are a very strong person to deal with all of this.

The stats you show here are very interesting...and a little scary. Makes me think twice about using C.CRM for donor eggs should my fresh cycle fail.

I would guess that 5 - 10% of applicants get through their screening process. Will be interested in hearing the true number.

Take good care of yourself during this time, I am thinking about you.

Mo and Will said...

Newbie, the sample sizes of the other clinics are much smaller, making them much less reliable and valid (meaning if they had more cycles, their numbers would likely drop)...so don't be too scared about things at denver. it IS a great clinic, even if no one passes their freakin' screen. And even without that, unless you're seeing a 7-10% increase minimum, i don't know if the difference is clinically significant...

Em said...

I'm going to go with 33%.

strongblonde said...

arg. just catching up after being away for a bit. i'm so sorry that yet another issue has arisen. enough of this already!!!

i remember talking stats with my RE. she said she loved that place b/c their numbers were real and that many of the other places were thought to be cooking their numbers...in addition to their small sample sizes.

my guess is that less than 5% pass the criteria. i think that they have super strict criteria and that's what helps keep their numbers lookin so awesome!

best, a

Caroline said...

Hi Mo,

I'm so sorry that you're going through this. I am so impressed that you've decided to move ahead despite the frustrations that you've experienced. Move ahead and process it all as you go, as you said.

I think the implications of your sister donating her eggs to you could actually be the best option. Your child would have a genetic link to both you and Will. Also, the child would have that relationship with your sister. I know it's not an easy choice, but I would go for a family donor than an unknown donor if possible. Just my thoughts though!

Good luck with whatever path you decide to take. You're a very brave woman and I think you will be rewarded for it.

C x

N said...

There is a huge difference in sample size. 204 and 24. Wow. Good luck. Sounds like you guys make well thought out decisions.

Mo and Will said...

N, we try (sigh). We do try. Not that it has helped...

Alexicographer said...

Hmmm. I'll throw out 8%, just for the heck of it.

I fear, though, that you are comparing apples to oranges. I actually pulled the CDC stats, and your clinic comes out good on # of embryos transferred -- the average for those 10 clinics is 1.99 (ranging from 1.8 to 2.5) and they are right at 2, so that's nice and solid. But absent information about how many transfers are known (or even clinic pool versus outside agencies) donors I think it's just impossible to compare the clinics on those stats ... any clinic wanting to compete on the basis of success rates will stack its pool with lots of young donors, and any clinic that allows known donors (many of whom are likely to be family members of would-be recipients and probably not in their early 20s) is going to skew its stats badly. I remember seeing a local magazine in which my own RE was bragging on our local clinic's success rates with DE and he was quite specifically quoted on, "our success rates with DE cycles using donors recruited by our clinic" or something like that -- and the % he gave for their success rate was wildly higher than the published CDC stats, presumably for the reason I mention -- he was (in effect) cherry-picking the cycles he was reporting. Clinics can also cherry-pick the cycles they allow ...

As ever, best wishes to you both as you journey this path.

Kate said...

I'm guessing 25-30%, but that's probably high. I don't even know what criteria they use to pass/turn down donors. If they have to have a pristine family medical history, I'd probably drop my guess to 5-10%.
Hope you either find the perfect donor in their own pool, or that things all work out with your sister. It does sound like a good option...

"Jay" said...

I'm glad you are looking at the CCRM in house donor pool. We went to SDFC and used a donor through their in house program. It helped that our donor had cycled before, so all of the screening was out of the way. I know my donor was screened by a geneticist, but I have no idea if karyotying was done?

Just curious, how old is your sister & does she have her own children? I don't have any sisters, so that wasn't an option for us! It is all going to come down to what you are most comfortable with (or least uncomfortable).

I don't know if I would leave CCRM. They have solid stats & you want to have the best possible outcome with your donor egg cycle. It's super annoying they are so stringent in their screening, but important at the same time. I bet they only accept 7% of the donors they screen.

Enough rambling here. I wish these decisions we're easy, but they aren't. I just hope you don't give up just yet. Oh, and how is Moxie? You haven't mentioned her in a long time!

Sue said...

The interesting thing about the reported stats is that they are from 2009 - seems like a lifetime ago in the DE world. In my research I found often the current stats (number of cycles and clinical pregnancy rates for 2010 or the first half of 2011) are dramatically different than 2009 stats. So, I realize you probably already did this, but if not, it might be worth actually calling the other clinics you were thinking about and getting their stats for this year to date (they should be able to give you the 6 month stats based on clinical pregnancies). Of course, staying with CCRM has lots of benefits, but if you don't find the perfect donor there - or want to find a clinic closer to your sister, it might be worth checking out.

Good luck, I'm sorry this journey continues to be such a darn rollercoaster of bad luck for you guys. Hang in there.

Anonymous said...

staying at ccrm brings with it the fact that you know personally their key staff and doctors who know your history thru and thru... changing clinics puts you as a 'newbie' there at a time when you certainly are not a newbie in any sense of the word. your issues do not solely lie on using a donor (don't mean to sound harsh, just pointing out that your own body is a factor too, and ccrm already knows well all the history with your body). their screening exists for a good reason- not just to keep their stats up in the community, but to protect YOU and give YOU the best chances of success, to protect you from failure as much as they can. tough screening, those tough-love conversations with dr.sch about what to do next, they exist because they are trying to get you where you want to be (a parent) in the most gentle and succinct way that is possible for your particular situation. if that donor has a karotype issue, i totally agree that it would/could end up affecting the pregnancy- why go thru that?! let the screening filter the best for you, and go from there- it is the patience that is the issue here, and your own resilience. you are very resilient, and smart- let your smart decisions about ccrm work for you, and i truly think that you could very well end up as a parent sooner than later by sticking to your process.

xoxo

Anonymous said...

whoops- forgot to add my guess... 5%?
their screening for gestational carriers as tough too... ALL of my friends/family list of 10 possible candidates dropped off in a couple minutes of reading thru their criteria! a terrible feeling, but it exists to help you, not hurt your chances.

LisainSK said...

Mo...they can screen out the inversion using FISH but we were told by Reprogenetics out of New Jersey that of 56 couples that in their clinic's history to screen pericentric inversions...500 embryos were screened, 400 were normal and only 41 developed into a pg. Of course these are embryos developed from all over North American IVF clinics and waayy too many variables to consider. Anyway...I know you are devastated about your very much loved donors latest bombshell but honestly CCRM's stringent screening process is only there to save you from further financial and emotional turmoil. Because if here karyotype wasn't screened and DE embies were transfered to you or a surro and a m/c later on...it would just lead to further questions and frustration. But I know you know that...so my advice is to stick with CCRM. I thought their DE pool was ridiculously small as well and I was NOT going to accept just any "donor" I was willing to wait until my mini-me surfaced. And luck be have it...she popped up on the first viewing. They update their database every Thursday and so every hour from when the clinic opens you search the database. And you have to be quick...no "lets sleep on it"...as she'll be scooped before you know it. So my advice is to stick with what you know. Take care...

Emily Erin said...

Hmmm. 6% Not that it's a reassuring stat, but I'd tend to agree with those who have voiced the philosophy of staying with CCRM. They've got lots of data behind them. Oh, and just an aside-- thinking of your uterus as a death trap might not be the best way to assure a healthy pregnancy. I know that it's nearly impossible with your history, but positive thinking really *can* help. (Perhaps not as statistically significant as say, donor screening, and much harder to prove, but it does make a difference). Hugs from here, and hoping that you find just the right person, be that your sister or a known donor in Colorado's pool.

Roccie said...

Boy you blew me away with that list. I was certain CCRM would be number one.

Consider this: when my eggs were clearly a no show, the folks at Large Fertility Operation of IL told me to take it to CCRM, who ranks well below Advanced Fertility. She talked about how numbers can be manipulated and she felt that happened at this clinic. I called them anyhow and found the ancillary staff to be rude. Yes, I am very easily put off but I didnt feel cared for there.

I would have chosen CCRM had I the money and the ease to travel. I adored the phone sessions I had with them.

In the end my clinic's % were not the top, but my RE's stats were. It all depends on your individual care. We picked a donor who had done 3 cycles at LFO but she was rejected by my RE. You need a place where your RE is willing to take that extra work for you. It sure sounds like you have that at CCRM.

God I want this so very much for you. It hurts me too.

Wendy said...

Still mainly lurking & silently sending soothing thoughts & feelings your way. I was going to guess about 17% make it through screening.

Anonymous said...

RMA-NJ does CCS and uses vitrification.

In 2009, they did 170 donor egg cycles with 67.6% of transfers resulting in live births.

http://apps.nccd.cdc.gov/art/Apps/FertilityClinicReport.aspx

I will be using them in January.

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