The USC nurse was able to answer some of my questions: Do they have their own embryologist? How skilled are they? They don't have their own, they use RGIs traveling embryologist or another company. I had heard about scheduling conflicts with traveling embryologists resulting in missing the window to biopsy on the correct day. No, she assured me, they've never, ever had a problem with scheduling a biopsy. The embryologist would be there on the day we needed them. What about PGD? They have a lot of experience with patients doing PGD. If we do IVF now but our probe isn't ready can we freeze the biopsy sample? She will look into it. (A poster on the genetics board I frequent says you can and she froze hers. Excellent news) She will have the statistics I asked for, success rates after PGD, freezing and thawing numbers, ready for me when I call tomorrow.
My RE replied to my long email with one line:
My recommendation would be for in-vitro fertilization. Sounds like I'll be seeing you tomorrow :)
That one line has me basically feeling excited/scared/nauseous/slightly hysterical all at once. I had the most bizarre PMS fueled desire to cry after reading it and it's still there, popping up when I least expect it. I had a feeling she'd be heading in that direction so it wasn't a shock but it's still got me all worked up. I think it has a lot to do with the crazy hormones I'm dealing with right now, coming off these medicated cycles is awful haze of cramps and PMS. Ugh.
If we go forward with this, we need to start building our probe ASAP. Unfortunately, this will be complicated somewhat by the fact that my little sister just got on a plane to Europe and won't be back for a month. What timing! She's going to have an amazing trip and I'm so happy she's there, I just had no idea we might need her DNA so quickly! I emailed RGI a little while ago and this is what they said:
We have worked with many families for Fragile X – it will be crucial for us to get genetic reports for you, your mother and your sister, along with DNA samples from them in order to create the PGD setup for your family. Please provide the genetic reports at your earliest convenience. Once we have those, we can schedule a phone consultation with myself or one of my genetic counseling coworkers. We will coordinate obtaining the DNA samples after we have had the phone consultation. At that point we can also check your benefits with Kaiser, to see if they will provide pre-authorization.
We have also worked with families requiring/using sperm donors. Please keep in mind that we will need to obtain a sample of DNA from the sperm donor. This can be in the form of a blood sample (if available, although it usually isn’t), or 2 vials of sperm. We need this in order to create the PGD setup, which will be specific to you and the sperm donor. This can also be coordinated after the phone consult.
So basically they need my DNA and genetic report, no problem. Two vials from our donor? $1700 but sure, okay. Genetic report from my sister? No problem. Her DNA however, is not available right now. Her DNA just landed in Israel and won't be back until it's traveled through several other countries, possibly including Italy and Germany. My mother has her genetic report and I can ask for her DNA, but I really didn't want to have to. This definitely complicates things.
This is going to be such an expensive step. It would be amazing if our clinic had some sort of risk sharing program with a guarantee but I don't think they do. At least I think it's only the money that's making me nervous/anxious. I've been essentially following an IVF protocol this whole time, I'm practically a pro at giving myself multiple injections a day, and I'll be knocked out for the egg retrieval so I won't even feel it. It's just such an expensive gamble to take and so much could go wrong.
What if last cycle was a fluke and we get no eggs? What if all my eggs carry Fragile X? What if none of our embryos survive and it's all a waste? I so hope this works, it would be such a terrible blow to do all this and still come home empty handed. It's so much to consider.
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