Sunday, September 29, 2013

So... Now What?

Thank you so much for all of your amazing support and for your sincere happiness for our miraculous report of having FIVE euploid (normal) embryos.  We are still beyond happy and are so pleasantly surprised with how things have turned out thus far.  But, with that enormous amount of happiness, comes a lot of confusion.  I don't get it... If all five of my embryos are genetically normal, then something else must be wrong with me.  If all five of my CCRM embryos are normal, then I'd have to believe that at least one of my eleven embryos that were transferred here in Boston, had to have been normal... I mean... right?!  Wouldn't that only make sense?

Well, I had the chance to ask my doctor those very questions last week, and unfortunately, I didn't exactly get the answers I was looking for... Apparently, my doctor doesn't really know if CCRM's protocol could have produced better quality eggs than my protocols and cycles locally here in Boston.  And, when I asked if there could be anything else wrong with me... if there's anything else I could test for, I was told that I've pretty much done all I can - I've had a hysterosalpingogram which showed no blockages, I've had a hysteroscopy which showed no fibroids or polyps, and I've had the BETA 3 Integrin test which showed that I do not lack the protein necessary for implantation.  Based on those results, my doctor strongly believes that I do not have a uterine issue.  Rather, he said, we know what my issue is: my issue is my eggs.  UGH.  I swear, no matter how far I get in this process, my bad eggs will always haunt me.  I asked if, at this point, because I have five normal embryos, I would be on the same playing field as someone who doesn't have high FSH, or as someone who doesn't have a crappy egg reserve, or as someone who doesn't have bad and ugly eggs.  And, unfortunately, my doctor explained to me that no, I would not have the same chance of success as that of someone who, I would like to call... normal.  Blah.  At this point, I was sort of done with the conversation.  I didn't ask what my chances are or how much lower my chances are... I just didn't and don't want to hear it.  My doctor went on to advise me to transfer two of my best embryos (two 5AA's) and then he congratulated on my good embryo report.  Click.

Here's what I know: someone who ends up transferring a euploid (normal) embryo, has a 70% chance of implantation.  Even though my doctor said differently, I can't seem to understand how I wouldn't fall into that same bucket of chance for success.  Yes, my eggs suck.  Yes, the most eggs I've ever had retrieved was 10.  Yes, I've had a cycle with a really bad fertilization rate.  BUT... I have five normal embryos, people!  FIVE!  And so... I believe, I have to believe, that there's a pretty good chance of something else being wrong with me... Or... maybe CCRM really does work miracles?

So, at the end of last week, I took it upon myself to call a Reproductive Immunologist in NYC.  If I want to move forward in having auto immune issues tested, there are some next steps that I have to complete.  I'll need my local doctor to contact the RI in NYC for a Physician consult.  The RI in NYC will provide my local doctor with the list of blood tests that I'll need to have ordered.  My local doctor will order the tests and then would receive the results a couple of weeks later.  I would then sign a release for the results to be reviewed by the RI and then I'd plan to meet with the RI to hear my diagnosis and a potential treatment plan.  Only thing is... I'll need to figure out how to coordinate care with CCRM if I have an immune issue... And that's probably the biggest hurdle I need to figure out at this point.

While thinking about all of the other (immune) issues that I could have last week, I also heard from my nurse at CCRM with a laundry list of things that I need to complete before transfer: thyroid blood test (scheduled for tomorrow morning), Physical and PAP (scheduled with my PCP on Thursday - I also plan to ask my doctor on Thursday if she can e-mail the RI in NYC for the Physician consult so that I can hopefully get started with all of that blood work) and the most annoying to-do was having Nick's and my blood drawn for communicable diseases.  Blood draws themselves don't bother me - but these specific blood draws have to be done using CCRM's shipping kit, which I paid to have shipped overnight to us for Saturday delivery on Friday afternoon.  This means, Nick and I got to spend our morning at a local hospital waiting to have our blood drawn, then explaining about a million times to the phlebotomist and her manager that the blood then needs to clot, be spun and given back to us so that we could freeze and ship it back to our doctor in Colorado.  Luckily, after a lot of frustration on my part, we ended up walking out of there with our vials of spun blood that is currently being frozen in our freezer so that I can ship it back to CCRM tomorrow morning.  It's not until CCRM has ALL of the results for ALL of these tests that I can move forward and set the tentative transfer date that I was given (in November) in stone.
And so, that's where we are... sort of in a tangled web right now.  We're trying to have as much hope and faith as we possibly can right now... and I'm trying to train my mind not to think so negatively.  I just still can't imagine this turning out any different than it has in the past.

32 comments:

Amber said...

I would think, because they are NORMAL embryos, that it should put you on the same playing field as well. Regardless of how crappy your eggs are, these one are normal. I would have a lot of your same questions. I honk it is great that you are moving forward in checking with an RI before transfer. Might as well be absolutely sure so you have the BEST chance here. Sounds like you have a whole lot on your plate to get done this week. Good luck with everything! I am looking forward to your next update.

Amanda said...

I have zero answers and zero advice. : ( Sad, I know. But I'm agreeing with you that five NORMAL embryos is the best news yet! Hope all of these appointments and blood draws go well! I'm excited to get the transfer on the calendar!

Emily said...

Did you happen to ask CCRM what their viewpoint on RI was? I know it's very controversial. We have a Skype consult set up with Dr. Sher this Tuesday to talk about possible immunology testing. Not sure if we'll do it or not, but I want to hear his opinion. Delving into RI is such a can of worms and there are no guarantees, but a lot of it does make sense when nothing else seems to be working. If you haven't seen this video, I think he makes some valid points... http://new.livestream.com/haveababy/implantation-dysfunction/videos/2043559

I shared that with my hubby to try to explain it all to him. Anyhoo, I know it's such a hard decision to know whether to just try using the 5 frosties you have or to make sure you've looked at everything BEFORE you transfer any of this new batch. I wish there was more of a consensus among RE's about the validity of all the RI stuff. It's maddening to try to get info. on this stuff really, especially when your RE might not agree immunology is a factor at all. Looking forward to hearing how it goes for you!

Gypsy Mama said...

I agree with you, I don't understand why you chances aren't as high as a woman with typical eggs. I mean, a healthy embryo is a healthy embryo, right!

All you can do now is hope and pray for a miracle. I am so excited for you and I am so excited to cheer you on in November :)

Caroline said...

girl all this will bring you one step closer to being a momma!!! I admire your steadfastness in all of it! I am PUMPED about your 5 embryos!!!

Nina S said...

You've made it so far! I applaud you for doing the RI consult. Although, it's frustrating having to wait to transfer, it took a lot to make those five healthy embryos, it's wise to make sure they have the best shot at implanting!

the blogivers said...

Hmm, well, I guess it's good that the doctor is shooting you straight and not giving you false hope, but that puts you in a frustrating spot: wanting to be optimistic but also needing to be realistic... hopefully staying busy with all of the stuff on your "to do" list (and work) will help keep you distracted! Meanwhile, we'll just keep praying!

Meredith said...

I don't see why your odds would be any different and I'm sure there's nothing else wrong with you. I think you should be positive and think you have these 5 great ones and tests have revealed that you are normal. I have four losses under my belt and my first IVF failed. I had two grade As and they didn't stick. There's really no rhyme or reason in terms of an explanation. Also, like you, I have egg quality issues. Second IVF cycle I asked about immunology and if there was anything to it and doc told me it's very controversial, no and not to worry and be positive. Second IVF I only had two fertilize (which sucked) and of those only one was grade A. Needless to say I'm 6 weeks 5 days pregnant with that embryo. My point is, your cycle in Boston has nothing to do with your cycle at CCRM in terms of failure vs. success. Just because the Boston embryos didn't stick, doesn't mean these won't. I'm totally proof of that and I only had one to put all my hope and faith into. Worth it to look into immunology if you feel that strongly, but it could just be one of those things and one of these new embryos is meant to be your baby. Just food for thought! Good luck and try to stay positive!

Infertile625 said...

I don't know anything about anything when it comes to immune testing. Although I hope it provides some much needed answers. I do like the sound of 5 healthy embryos. Best of luck.

Melissa said...

Praying for you, girl. I agree that 5 normal embryos HAS to be good! And how can it not even out the playing field a little?! ;) Praying for a miracle, and soon! :)

Erika said...

This sounds so complicated and crazy!! Ugh!! I am thankful for the 5 normal embryos and the RI sounds like it could be promising. I'm sure you're really excited about 50 more dr appointments, too!! :)

Christen said...

No advice to add, but just wanted to say I am sending out positive thoughts all the time. You guys have been through so much, and I think 5 normal embryos sounds very, very hopeful.

Anonymous said...

If you're still looking into immunology issues, another doctor you could to do a consult with is Dr. Joanne Kwak-Kim in Chicago. She is pretty comprehensive with her work ups and will work remotely with other doctors.

Sarah Ish said...

Aubrey, I hope the immunological issue is no issue at all for you! We have our fingers crossed( and paws) for you! Also we are heading to CCRM too;)

bellehavendrive said...

Lots of hoops to jump through, girl. :( I hope you and your doctors get answers to all your questions well before November! Ugh, why can't your perfect embryos be just as good as someone else's?! I don't understand that one, but I do have have faith that your next transfer will be a good one. :)

Sally said...

Glad to hear about your plans. Hoping for the BEST and having faith in those 5 little guys :))

shay said...

Did any of your doctors mention the possibility of there being issues with immunology in the first place? I'm trying to cover all my bases too as we are just starting our first FET cycle, and I asked my dr about immunology issues and she doesn't think that would be a factor... i have to check to see if they even did a beta 3 integrin test... not knowing what the EXACT issue is, is SO frustrating!

But, glad you have 5 healthy embryos! yay! so, i'm assuming you did genetic testing on them? was it expensive? did you have to pay for it out of pocket?

Mrs. Lost said...

5 healthy embryos...5 healthy embryos...5 healthy embryos...

That is amazing, and you should hold onto that amazing news. I have faith that your take home baby is right around the corner. Stay strong! You can do this!

Suzanne said...

I'm so confused with why a normal embryo isn't the same as any other woman. I can only imagine how difficult that was to hear. However, I refuse to believe that your chances aren't fantastic. That said, I love your plan to rule out the immunology issue. At this point, with this much on the line, why NOT!? Biggest hugs. xo

Lindsay said...

I've been following your blog for a while. So very happy for you... 5 normal blasts is amazing. I went thru IVF locally with 2 failures and one success for our first child and then had 3 more IVF failures locally for a sibling and went to CCRM for one last try and had twins first try. We did CCS as well. My twins are now 2 yrs. Back when I was at CCRM going thru all of this I read sooo many CCRM blogs and forums. And met so many women who had failures locally and had good embryos but failures...and then at CCRM did CCS and worked first try. I did do some immunology but Schoolcraft told me it was "hocus pocus" and the Beer Clinic (immunology clinic I went to)... was stealing my money. I did some of their treatment, but not all of it. They wanted me to do so many $$$ expensive IVIG infusions... I just couldn't spend $4000+ on multiple infusions that I wasn't even sure I needed. I ended up not doing it and everything was fine. I could go on and on about all of it.
I would be VERY hopeful if I were you. Look at the success rates for CCS transfers on their website. It's pretty amazing!!!

feel free to check out my blog on www.hopefulincolorado.blogspot.com. It's about my cycle at CCRM. I think my contact email is on there if you want to email me. I love to help!!

Ashley said...

Being a fellow low AMH'r I could never understand why with. Ivf that my chance was lower either? I got it during a natural cycle I was down a tube and therefore an ovary! but with Ivf I like you got a lower number than eggs than average! ended up with none to freeze, yet my egg quality was amazing. I feel they contradict sometimes. But granted I also dodged the donor egg convo when I got pregnant against their numbers and odds! But I was told it was coming! So I think you need to sometimes go with your heart. I postponed the AMH follow up because I couldn't bear to hear one more bad thing, yet then learned I was pregnant the simple way, with just clomid. My story is very odd, but trust your instincts because clearly the numbers and logic can lie.

Kimberly Q said...

Unfortunately none if us has all the answers. But I want to point out one possible flaw in your argument. You said that since you had five normal embryos this time you must have had at least one from your last 11. Maybe or maybe not. The quality could be better this time due to protocol. Or because of the quality if CCRMs lab. Just because all embryos came from your eggs does not make them equal. So perhaps these are better eggs and the other ones didn't implant because of egg quality not anything to do with uterine quality! I am sticking to the idea that these five as the best you have ever had!

Allison said...

Hi Kelli,
I came upon your blog from Mo's. I never had an AMH drawn because I didn't want more bad news but here were my stats: Day 3 FSH 10.4, Day 10 16.6 on CCCT, AFC of 2-5 on average. I canceled my first IVF with 1 follie and was successful with an AFC of 2. ER of 3 eggs, 3 embies and I have triplets. I do not buy the argument that low reserve women have worse eggs. There is a study floating around the Network 54 High FSH boards that show the correlation is with AGE, not reserve. You are young (I was 30 at time of transfer) so I wouldn't despair. I would definitely check out the RI angle. There does seem to be something there. It may be expensive but it's given a lot of pp their take home babies when tried!! Best of luck. You can check out my blog too if you want more of my story. I cycled with SIRM and they definitely support immune issues.

Allison said...

Sorry I called you Kelli! I see it's Aubrey. ;)

Here is the study link:

http://www.ncbi.nlm.nih.gov/pubmed/15016786

Anonymous said...

Ugh! The possible immune factor opens up a whole other can of worms! We went through something similar and ended up asking the question "so, if I test positive for an AI issue, what is the treatment?" We were told infusions of intralipids. Since my insurance covered the actual infusion, just not the drug, each infusion was $125 (total of 4 infusions). We researched the drug and found it to be harmless so we opted to skip all the testing and just do the infusions. Good luck to you!

Anonymous said...

Congratulations on your embryo report! I happened upon your blog a while back. I'm at CCRM too, and cycled just a few months before you.

Everyone is different, but I thought it might be helpful if I told you my situation, as it is strangely similar.

We were going on 5 years TTC by the time we arrived at CCRM. I'd done 5 IUIs and 3 IVFs at my local clinic. We were completely unexplained, and in the end, they really thought I had an egg issue (even though I'm in my late 20s). We were having most of our embryos fall apart on day 4, and they felt there was something genetic going on, since the genes "turn on" on day 4 (says Dr Surrey).

So, I was on tons of supplements before our cycle at CCRM for egg quality, did a slower longer stim protocol, and then of course did the retrieval and fertilization at CCRM. I was so sure that we wouldn't have many blasts, or that the genetic results would be good. However, I had an identical result to yours - 5 blasts, and all 5 were normal.

I asked Dr. Surrey the same questions - what else is wrong then? Were the eggs better this time? I didn't get it.

He gave me a similar answer to the one you've explained here. Despite my doubt in my body's ability to ever get pregnant, we moved ahead with a frozen transfer in August.

Shockingly, it worked. I can't believe it still, but we are pregnant the first time in 5 years. It seems so strange since nothing else worked before, and there's no clear explanation why this should be different.

So, do whatever you have to do to feel as comfortable as possible. Checking in on the immunology possibilities sounds like a good bet, and at the least, could give you peace of mind, even if everything looked fine. But from my crazy experience, somehow, the combination of everything at CCRM seemed to work, and the hardest thing has been trusting that something can someday work, since there's been no data to support it in the past.

I wish you so much luck - this all is such a challenging road, and you seem so strong. I hope this was helpful and not annoying, as I know everyone is different. I just really hope this works for you.

Jessah @ Dreaming of Dimples said...

Girl. I get it. You gotta do what you gotta to make sure you don't have any regrets with these 5 embabies. I'm so hopeful for you that this is your team. These are your babies.

conceptionallychallenged said...

I'd be as confused as you are. It seems like a new piece to the puzzle that just doesn't fit.
Nevertheless I hope you don't actually have any immunity issues, but that these are really 5 perfect embryos, giving you great chances at a take-home baby.

Sarah said...

I don't understand a lot of this, but what I do see is some good news still and a silver lining so my fingers are still crossed and my thoughts are still with you!

Laura said...

I'm glad to hear you're progressing to the next steps now. I'm still so happy for you guys with the testing report!!! I'm surprised that your chances would still be lower given that your little embabies came back normal, but you've got 5 which is awesome!

I look forward to your next steps, I'm really rooting for you guys!!:)

danacara said...

Big hugs. I adore your blog and I've been down the road that you're on. After about a zillion tears - success. There is reason to hope. CCRM is unbelievable.

You are doing an incredible job balancing work with all of the stress that you're under!

Sending you warm thoughts and fuzzies!
Dana

Amanda said...

aubrey...thank you for your blog!! it gives me hope!! I actually just started my blog tonight...you inspired me. http://charlesandamanda.blogspot.com/

 
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