Wednesday, November 11, 2009

The Colorado genetic counselor rocks

Thanks for all of your blogoversary wishes. We are ready to look forward to the coming year - and hope that there are fewer disappointments and more successes - please! Loved your comments reminding us to focus on what's important - our love for each other, and to be mindful of the accomplishments the last year has contained. We're with you guys - may this be the last year that this is an infertility blog!
So, finally, to fill you all in on the rest of the Colorado visit...
Our last meeting of the day was with Danielle, the genetics counselor. I'll be honest - I really didn't want to go to this. I mean, I spent an hour and a half with an M.D. geneticist in New York just a couple of months ago. What could this counselor possibly add? That said, once we met Danielle, I liked her immediately. And what she had to say perked up my ears rather quickly as well. We were drawn to Colorado because of their microarray technology. She said, however, that after reviewing our files, she'd spent the day meeting with the scientific director and making calls on our behalf because she felt that microarray wouldn't be enough for us, given my cancer treatment history and the fact that our losses have included both trisomies and polyploidies (overachievers, us!).
Basically, she said that microarray can only detect trisomies. Apparently, the way the technology works, microarray looks for alterations in the patterns of chromosomes - so one more or one less of a particular chromosome, a heterogenous problem. Microarray does not pick up polyploidy - because in this situation, there is an extra set (or sets) of every chromosome. And so the test reads it as normal, since it's a homologous defect across the entire set.
Who knew?
But surely, we're not the first couple to ever cross the Colorado Clinic's threshhold who's had a polyploidy plus a trisomy? I asked this, and Danielle assured me that although it is unusual, we are not.
But she said in our case (lucky us!), they were worried the polyploidy problem (usually a 1 in 1,000 occurrence) might have a tendency to repeat.
Hearing this, part of me was like YES! Finally, someone agrees with us that there is something unusual here - that these silly population statistics may not apply to us! This part of the information was super validating and welcomed. At the same time, I also had a Oh no, we are so f*cked up sort of reaction.
Bottom line, according to Danielle, we will need to do both microarray and FISH screening (the type of screening they use in PGD) to look for both trisomies and polyploidies. Because they do not want me to transfer embryos back thinking they are normal and then find out that they aren't normal after all. So they want to do a single biopsy of each blast (should we be so lucky to get blasts), split the tissue from each blast and send half of it for FISH and half of it for microarray.
Sounds good, right? The only problem is that each of these tests costs approximately $5,000. So it would add an additional $10k on top of the usual ridiculous IVF fees.
Ha. Ha. Ha.
Before we both fainted, Danielle quickly said that the Colorado clinic would never expect us to carry all of this cost and that they were already negotiating with the labs involved to waive fees so that we could have both tests run for no additional cost. In fact, she waived her $150 fee that day to get us started down the road of savings and said they were going to figure out how to shave $5,000 out of things somewhere so we don't foot the bill.
This was our final appointment of the day and we after we finished speaking with Danielle, we got into our rental car and drove directly to the airport to catch our flight home. What a way to finish out the day.
Our final impression was Wow. They are really thorough and have thought about our specific situation and what would be best for us. They are really looking out for us. Needless to say, we were impressed.
We'll keep you posted on what they're able to work out for us.
Mo
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35 comments:

  1. Isn't she great? So glad they are working with you guys, trying to make this something that might be financially feasible. I do think you are an unique case, and I'm glad they see this too.

    So what are your next steps? Have you two made any decisions about where to go from here?

    And BTW, I do miss "Wednesdays with Will." :)

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  2. Wow. Just, wow. They sound fantastic, and it sounds like you're in the right hands. Can't wait to hear your decision-making process through this.

    And let's get together and drink soon, shall we?

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  3. $5,000 for FISH sounds like an awful lot, so I'm eager to hear what they can work out for you. Would they do a karyotype first and then FISH? Even still, that seems high.

    I'm glad that you left feeling that they had really thought your case through. I imagine that must have given you a lot of comfort.

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  4. WOW! I am impressed! What an informative trip for you both. Hoping this is the start of your happy ending...

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  5. K, Hmmm... really? It is actually $4,600 for the PGD and $5,300 for the microarray... at my local NYC clinic, PGD is also $5,000. All PGDs use FISH technology as far as I know, which is why they can only screen for nine chromosomes...Do you know of cheaper pricing?

    Mo

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  6. I liked Danielle too. One thing that doesn't make sense to me is that when I got the MA results back from last IVF they informed me that one of my embryos had quadriploidy. I don't understand how they know that if MA doesn't accurately screen for that? Regardless I'm glad that you may have a new path ahead of you!

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  7. Me,

    That's weird - contradictory to what I understood ...I'll definitely need to ask more questions. Danielle is out until Dec. 1, but I'll call her after that.

    Mo

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  8. I am so glad you found someone who actually cares and doesn't just want to push you into an IVF without research. That has been my problem, lately. My issues are a complete 180 from your's. But my RE doesn't care to find out why I can't conceive, just push me on towards another procedure.

    So, it is refreshing to hear that there are people out there that give a damn! Happy to hear it and happy for you, too!

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  9. So...how did you get CC.RM to try to get you discounts? We, like many couples, are 100% self-pay and are definitely struggling to pay for IVF and genetic testing there. Yet there was not a single mention of anyone trying to reduce fees on our behalf, etc. So what did you do? I know your history, but others have issues too, and I want to know how to get them to offer us a discount.

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  10. Anonymous,
    We didn't "get" CCRM to offer us a discount. This was their idea. My guess is that they don't want us to do microarray without the additional FISH testing, because they feel that we might mess up their microarray pregnancy rate stats if our "normals" are still not normal. And they wisely surmised we would not be interested in spending an additional $5k on top of everything else for our sixth fresh IVF cycle. We are also out of pocket. So no advice on how to "get them to offer you a discount." You could just tell them that you're having financial difficulty. If you've cycled there before, maybe they can work something out for you?

    mo

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  11. Yay for fresh starts and competent people! Sending so many vibes your way!

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  12. Wow! I just started following you blog. It is amazing how different doctors can be. I am really glad you fell so comfortable with your new doc! Good Luck!

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  13. I'm impressed. If only all REs were so thorough.

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  14. Wow. I'm very impressed that they aren't just trying to suck money out of you, but are really trying to make this a viable possibility (in all senses of that phrase).

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  15. Awesome. So happy that you are on your way to finally getting some answers. I love it when clinics try to save us money instead of trying to milk us for every cent we have. Good luck girl. We are all pulling for you.

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  16. I am very impressed with them too.
    What a wonderful job they did checking into everything just for you! They care and I'm happy you found them. How wonderful to get some of the costs down. I pray for all your dreams to come true. May God bless you with perfection.

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  17. Sometimes, a direction is almost as good as an answer. I'm glad you are finding a direction to take. Peace and good wishes on this continued journey.

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  18. WOW they do sound like that have it all together. I am so happy you went there and finally got some validation, although maybe not exactly what you wanted to hear. that is GREAT that they are trying to find ways for you to save money too!

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  19. Mo, so pleased for you that they are on the game in your case. I very much liked Danielle too - I felt she was FOR us y'know? (although I wasn't able to "get" her to offer us a discount - btw I really, really dislike anonymous comments - if you're going to make a comment, make it clear who it's from - end of rant). I am looking forward to seeing this go in the rightest of right directions xxx

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  20. This doc sounds awesome - totally assessing YOUR situation, AND finding a way to help you with it cuz it's different and needs extra help. Them finding ways to help fund it is awesome. Totally awesome.

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  21. Seriously....Colorado sounds like the place to be! I'm very impressed by how thorough they are. I'm glad that you are getting some answers.

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  22. Happy happy anniversary and
    wow. I am impressed as I can be with the very personal service you got at CCRM-- like you matter as an individual case-- how great is that?!?

    I am so glad they'll work with you on keeping costs as low as they can. And I am so hopeful for you, that blog year 2 will be filled with a successful pregnancy and a very happy Mo and Will. Moxie will be miffed.

    warm wishes to you and SO glad you are here Mo, truly.
    Thanks for blogging.
    warmly,
    Kate

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  23. Wow! This clinic sounds so on the ball. I am very impressed. They sound like a good fit for you and your DH as well. And it's great that they are willing to work with you on pricing. OOP sucks and any little thing helps.

    I'm so excited that you may be on your way to finally getting out of the gray and into the back and white of this.

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  24. Happy blogoversary! :)

    And, glad to hear the appointment went well today. At least informative and moving in a certain direction! I hope they are able to get you the answers the two of you need. Sending thoughts your way as always!!!

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  25. Pretty cool - and even cooler that they are trying to be a bit cost conscious.

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  26. Wow. I am so glad that you are getting this kind of treatment from them. The fact that the financial aspect will work out in your favor is simply icing. It doesn't happen often for people doing IVF, so when it does happen, I think we should all cheer for them. So, Yay! :)

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  27. How fantastic that you walked away feeling WOWED! It is awesome that they are also taking your finances into consideration....it seems like they really do care and that it is not just about money! Best of luck!

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  28. DH and I LOVE Danielle! She is just awesome. During our cycle (and before and after), she has gone out of her way so many times to answer questions for us, do research for us (she even researched specifically for DH's balanced translocation, and sent us papers from some password only site that she had access to)

    She's called us while she has been on vacation, emailed us back late at night, and in general has been absolutely awesome!

    I'm glad your experience with them has been good so far. I hope things continue to go well!

    Good luck and happy blogoversary!

    (Oh, and thanks for the absolute sweet comment on my blog! Yes, I feel a special connection with you too, and I'm sure we'll meet some day - either when I come to NY, or when you come to CA!!)

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  29. That's really cool how seriously they're seeing you as an individual. Because CCRM is a machine in many ways, and I think that sometimes you have to be your own advocate, even there. But it sounds like they're really digging deep for you. And the discount thing--awesome! Our doc there was ALWAYS mindful of our OOP status and if there was something we didn't absolutely need we didn't do it. There was even a small fee waived here or there. You have so much to think about but at least you still have options. Which can make us crazy--I know--but I still think it's nice to have options.

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  30. people love this clinic and i think i can see why. the thing that sucks is that you have to travel across the country... but some things are just worth it, right?

    xox

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  31. Happy belated blogoversary!

    I'm thrilled for you and Will that they're not only as thorough as you expected, but that they're going above and beyond to ensure your care is personalized. May the cross-country consults pay off in a big way.

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  32. Wow! That's really something that she is working on waiving the fees. It's amazing that they can be so specific!

    Much better than crossing your fingers and hoping that the embyo makes it, and then dealing with another loss. MUCH BETTER!

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  33. I am so glad that you liked the genetics counselor, and that she is so on top of things. It really sounds like a wonderful place, and it's great that they will work to find a way to reduce the cost of the testing for you.

    Also, thank you for your comment today. It does help to think about it in terms of my expectations not being met instead of feeling forgotten or ignored. I do still feel disappointed, but you are right, they didn't totally forget, which would have been more hurtful. I'm trying to get over it!

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  34. WOW, glad that they were helpful and had put a whole lot inot this, sounds like they have a plan.

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