Monday, March 18, 2013

A Constant State of Confusion

My call with CCRM was Friday afternoon. For some reason, every time I've come online to write my post, I've hesitated. I haven't known what to say or how to say it. I'm at odds over so many variables, that I can't even decide if the call was helpful or just added more pressure on decisions that need to be made. Well, I've put it off long enough, so I'm just going to lay it all out there, even though none of these decisions have been resolved.

Dr. Gustofson was great. So kind and personable. He even knows Dr. Rapisarda in Chicago and said he is very good and very smart. He did not say anything regarding the protocol in Chicago, whether it was right or wrong. I think I just wanted to much for my chances to be so much higher at CCRM because of their DOR statistics, but at the end of the day, while they are higher, it's not that much higher. Dr. G is giving me maybe 20% chance of success, while Dr. R is giving me maybe 10%.

Next steps would be:

FSH/LH/E2/AMH - These would be done locally on cycle day 3, frozen, and sent to their lab.

Testing in Denver on cycle day 5-13 would be:

TSH, Free T4, Prolactin, CBC, Vitamin D

HIV, HEP B, HEP C, and RPR

Chromosome Analysis (me only)

Fragile X

Blood Type and screen for Rubella and Chicken Pox

Baseline Ultrasound/3D - access the number of resting follicles and blood flow to the uterus

Office Hysteroscopy - This one is up in the air. If I can provide the photos from my Hysteroscopy last month, he'd be willing to nix this.

Sperm Analysis, Anti-Sperm Antibodies and culture and Sperm Chromatin Structure Assay for Trevor.

I don't know the exact cost yet for what they've ordered for me, but I'm thinking it's in the neighborhood of around $4k.

Next I would start an aggressive stimulation cycle without BCPS that would be EPP or Testosterone Priming. Not sure of the doses yet.

They would then do the egg retrieval, the CCS testing (Comprehensive Chromosome Screening) and freeze the normal embryos for transfer 2-3 months after. During which time I would be on Lupron.

All in all, without any actual costs yet, just from my own research and what they've posted on their website, we'd be looking at close to $35k for this first cycle. (and that doesn't include travel costs)

Wow. That's double what it would cost in Chicago.

There are so many reasons that I look at everything in Denver as a very good thing, however, the chances are still only 20%.

I asked my husband last night if it was selfish of me to even consider spending that kind of money on something that has such a small chance of working? His answer was an absolute no, but still, this is my issue and I feel extremely guilty.

This weekend since my consult, I've been questioning what the right thing to do is. Maybe we should try on our own a few months since my Laporoscopy would give us a better chance naturally? Maybe we should do at least one cycle with Chicago. We're going in blind as we have NO idea how I will respond.

I should probably mention that my second beta last week was 10.2. If you remember, on Tuesday it was 10.6. It went down a whopping .4. I had another drawn today. So until that is all the way down, I'm stuck in a holding pattern anyway.

While all around me, friends and family are popping out their babies, finding out genders and going on with their lives. I kind of just feel stuck right now. I really wish CCRM had giving me a little more optimism, unfortunately, they didn't.



9 comments:

  1. "While all around me, friends and family are popping out their babies, finding out genders and going on with their lives. I kind of just feel stuck right now." ........ feeling stuck is a horrible feeling. It's such a recurrent feeling in the infertility world....

    It's also always hard to hear your chances and be bummed they aren't higher. Im so sorry you're dealing with this. It's so unfair!

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  2. Oh, I know JUST where you're at right now, friend... First - I pinned that quote on pinterest the other day - so fitting, unfortunately :(

    Anyway, after my call with CCRM, I felt the same.exact.way. I was given a maybe 25% chance of conceiving with IVF by Dr. S. I was so unsure about whether or not to go out to CCRM (and spending all of that money) that we ended up doing 2 more IVF's and 1 FET locally. Finally, with this most recent failed cycle, I knew that now is the time to go to Colorado. The reason I mostly want to go is for the CCS testing - I just feel like with their state of the art lab, that's where my embryos (praying I have some!) would have the best care. BUT - it's a HUGE risk. With only a 25% chance of it working - I'm potentially throwing a lot of money away - but I'm praying that even if that's the case, I'll at least, hopefully, get some answers of out it. Even if it's an answer that I really don't want to hear.

    Sorry for the long comment - all that to say that I totally understand where you are. I think that a decision like this takes so much thought - I know you'll end up doing what's right for you and what you'll be most comfortable with at the end of the day. xoxo

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    1. That is exactly what my husband has been saying. If we do Chicago and it doesn't work am I going to regret not doing CCRM first. The answer is probably yes. It's just so disheartening to get numbers like that and stay positive and hopeful. I go up and down. Something else that seems to go hand and hand with infertility.

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    2. I know - it's all so hard. And then to have to make HUGE decisions like this on top of it is just the icing on the cake. It's also hard to base going out to CCRM on others' successes there. SO many people go there as a last resort and BAM! it works for them - I just keep saying, watch I'll be the one it doesn't work for... But, like you said, if I didn't go, I'd regret it. And I know I'd always wonder what if. I'll be thinking of you - and again, I know you'll come to the 'right' decision for you! If you want to even talk about CCRM (I'll hopefully know more after my ODWU), feel free to e-mail me! xo

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  3. I totally get where you are coming from. Such a hard decision! I mean, I hear soooo many great things about CCRM, but then again, I read blogs of women who have multiple failed IVF's at CCRM and have now moved onto other clinics.

    I guess in some ways it's similar to how most women get presented with the option to do IUI's or jump straight to IVF. There is no telling if IUI will work, and IVF has higher success rates, but IVF is so much more! I know you are past that step now, but it just makes me think about how much it blows that this whole freaking continuum of treatment seems to keep presenting more and more choices along the way. I am just a ray of sunshine today! Forgive me! lol

    Maybe time for a good ole fashioned sit down with the hubs to make a pro's and con's list at the kitchen table?

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  4. So bummed that you didn't get more clarity on your call. I'm wondering if my call with CCRM will leave me feeling the same way. Not sure if this is helpful at all but if I hadn't had a cancelled cycle with the local clinic...I wouldn't be getting a second opinion with CCRM. Out of the gate...I went into it hopeful and completely trusting in my local doc. In some ways, I'm not sorry I did that because I felt like the right thing to do. What I always do is assume my hubby told me we should choose option A and see how I feel. Usually that clears up any confusion coming from my heart about what is right for me. Keep us posted! We are in your corner. Hugs.

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  5. I'm so sorry your consult didn't give you the peace of mind and clarity you were looking for. For what it's worth, I would totally go with CCRM if I had the option (meaning, the cash). Since I don't have access to that kind of money any time soon, I am doing my best to fashion a CCRM experience out of my local RE. So far it seems to be working... I have a wonderful doc who has agreed to do CCRM's protocol #6 (even though this is her first time using this specific mix Antagonist/MDL/EPP). She says she respects CCRM very much and has sent some of her patients to them. BUT she also said (and I tend to agree with her) that CCRM uses quite a bit of (often) unnecessary steps (various testing/additional medications) that can drive up the cost of a cycle. Even still... if I had the money to go to them, I would. At this point, I would prefer the costly kitchen sink approach and I would prefer doing it with the number one clinic in the country.

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  6. I'm so, so sorry. All of this sounds overwhelming and frustrating. I wish that CCRM had been able to give you more hope. I'm so glad that your husband is being so supportive, that he is encouraging you to go in the direction of your dreams, even if those dreams have a $35K pricetag...even if you can't be sure those dreams will come true. Wow, these are such tough decisions. I hope and pray that you will find clarity soon and that you will have a peace about your decision, no matter where you end up.

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  7. I completely stand on the line as mentioned in that quote daily! I know just how overwhelming this all can be and the decision s that we constantly have to make never really knowing if its right because we shouldn't have to make them! Hang in there! Take things slowly, making yourself comfortable with each choice you make!
    I suffer with all of this in silence, but I am a new follower! Feel free to pop by and say hello sometime!
    I'm just an email away if you wanna chat!

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