"Besides having a healthy baby, is there anything else I can help you with?"

That was how Dr. Tur-Kaspa introduced himself at our first official IVF phone consultation today :) (the last consultation with Dana was for the PGD portion). He was nice to talk to and pretty funny. He's one of those doctors that "tells it like it is" and obviously enjoys what he does. Let me think...no, I think a healthy baby is just what we're looking for right now! It's funny, my husband, on the same call with me, got a totally different impression of him and didn't really like him. He thought he was too pushy. I think it's because he told him he had to quit smoking, and kind of babied him about it! haha :) I hope at least my hubby really quits for good now.

It looks like we probably will do the chromosome testing now though. The doctor says that even though our chance of birthing a baby with a chromosome problem is low, 20-30% of our embryos will probably carry a chromosomal abnormality. If one of these is transferred, then it probably won't implant or will miscarry very soon. So, we probably want to do the full chromosome analysis, too, to make sure we get pregnant that cycle! So, that's an extra $2,000 that will probably be an out-of-pocket expense. Sigh. Well, I feel better about doing that testing anyway. Then we'll know all of the genders so we can choose one of each to transfer :) .

Some bad news is, I was hoping to do that long list of tests during the cycle right before our PGD cycle, however, that won't be soon enough. We have to do it two cycles before, at least. The doctor said my hormone levels should be completely normal after just two cycles after my miscarriage and that I shouldn't worry about waiting so long afterwards, but I still want to be really safe. I don't want to move our testing cycle any earlier, so I guess that means the PGD will be delayed one more cycle :( . Sigh. Waiting and waiting... It will be the end of March - beginning of April now. Well, I guess there's nothing I can do about it really.

We asked about freezing leftover embryos, and he said that we should definitely do it. Even if we just have one good embryo left, it's so easy to do an embryo transfer when you don't have to do the whole ovary stimulation and egg process that we should definitely save it. It would probably give us the same chance or maybe slightly better than if we had tried naturally that cycle, and we will already know that it's free of IP and any chromosome problems, so it's definitely worth saving. He said it costs $600/year for storage after the first year. I didn't ask how much the process costs initially or for the first year since our insurance pays for the first year of storage. I think we will probably do this then. I still have to discuss it with the husband though.

We didn't have too many questions for him since we had just talked with Dana. I'll have to take birth control pills the cycle before our PGD cycle :( , and my husband has to stop smoking :) . We've been assigned an IVF coordinator: Mary. I haven't talked with her yet though. I'm going to call her and see if I can get a direct number and fax for her for sending the tests I've already had.

Updated Price List & Test List

Here's the total price list that Dana emailed me:

• $3,500 PGD setup fee - For design of our testing system (we don't know yet whether we'll be able to get the PGD stuff covered by insurance or not)
• $1,500 Biopsy fee - to test the eggs/embryos for IP
• $2,000 Optional full chromosome testing fee (we probably won't do this)
• $500 Optional gender testing of embryos (not sure whether we'll do this or not)
• $10,000 IVF fee - $8,000 should be covered by insurance, $2,000 we'll have to pay
• Seattle-Chicago travel we haven't arranged yet

Test List - These are the tests we're required to have before we can do the IVF/PGD. I think this will only be helpful for those of you that have some infertility experience, because personally I don't know what most of these are yet!
For me (the female) :

• CBC (I don't know what this is)
• Fasting Glucose
• Blood type & Rh
• Rubella Ab
• Varicella Ab
• CMV Ab (I'm guessing CMV must be one of the routine vaccinations, I don't recognize it though)
• TSH (don't know)
• RPR (VDRL) (don't know this either)
• Hepatitis B Surface Ag
• Hepatitis C Ab
• HIV Antibody
• Day 3 FSH (?)
• Day 3 LH (?)
• Day 3 E2 (?)
• Day 3 Prolactin (?)
• Cervical Cultures
• PAP Smear
• Uterine Cavity Assessment (HSG) (eww...)
• Day 2-3 Ultrasound
• Physical examination
• Genetic carrier screen as applicable for ethnicity (I don't know what these are, but I hope we don't have to worry about it!:
• Cystic Fibrosis
• Tay-Sachs
• Canavan
• Familial Dysautonomia
• Hemoglobin electophoresis
  

For my husband (why do HIS tests always have to be more fun than mine??):

• Semen Analysis
• Volume
• Concentration
• Motility
• % Normal by Kruger or WHO Criteria

• RPR (VDRL)
• Hepatitis B Surface Ag
• Hepatitis C Ab
• HIV Antibody
• Genetic carrier screen as applicable:
• Cystic Fibrosis
• Tay-Sachs
• Canavan
• Familial Dysautonomia
• Hemoglobin electrophoresis

I think just about everything is a blood test. The only one I'm worried about is the Uterine Cavity Assessment. Not worried about the results, but worried about the process...I think this is the one where they shoot some dye up into your uterus and tubes to see if they're open or not...ewwww. Not fun. I'm pretty sure I don't have any tube problems though, so hopefully it won't be that big of deal... We'll be doing these tests probably in January.

Storks sure complicate things!

We had our first official PGD consultation with Dana this afternoon! :) It took about two hours. She explained the whole process to us again, and answered our two pages of questions.

• For those of you with IP who are wondering - It is possible to do PGD without a second sample from a family member, in some cases. Unfortunately, I can't be more specific than that. In any case, if you don't have a second sample, it will probably lower the accuracy of the genetic testing. However, depending on the size of your gene deletion, they may be willing to work with you on a sort of shared-risk basis, where you realize that the testing is not completely reliable. It's done on a case-by-case basis. So make sure, if you have a miscarriage, to save a sample! Even if you're not sure if you want to do PGD in the future, you only have one chance to save it. Better safe than sorry!
• About whether the eggs or whole embryos will be tested - we won't know ahead of time. It's not an absolute thing, it depends on how the test goes for each individual egg. They will test the eggs alone first, and if the results are clear enough to give 98% accuracy, then they won't test the embryo. If not, they test it, too. So most likely we'll end up with a final group of embryos that include some that were tested as an egg, and some that were tested as both an egg and a whole embryo, all of which have at least a 98% accuracy rating. For those that were tested as an egg, we won't know the genders. For those that were also tested as embryos, we will.
• If we want to test the embryos that were only tested as eggs to find out the gender, it's an additional $500. They also offer optional full chromosome testing for an additional $2,000.
• Dana will write a letter of "medical necessity" for us to give to our insurance company to try to get the PGD covered, too.

As far as the additional chromosome testing goes, we're thinking that we probably won't do it. It would be nice, but really, we're not at risk for any other problems, it would cause additional trauma to the embryos, and it's an extra $2,000. It's an extra, not really something we need, so we probably won't do it. We probably won't do the extra gender testing either, because of the additional trauma it would cause to the embryo. Every time you take a sample, it puts the embryo at more risk, so if it's not necessary, we probably won't do it. We don't care about the gender for a single baby, however, we know we're at risk for getting twins again. We only want to have two children, one boy and one girl, so if we get twins, we'd really like to have them of opposite genders. So, maybe we will do the additional gender testing...we have to think about it some more. Probably some of our final embryos we will know the gender anyway, so it won't require additional testing.

To-Do List:

• Dana wants a faxed copy of our insurance card
• The paperwork that Dr. Tur-Kaspa's office emailed to me was just a privacy statement, request for a copy of our insurance and picture ID's, and a general health and fertility health history form for both my husband and I, about what you'd expect.
• We both have to submit DNA samples (blood samples) and consent forms, and a $3,500 PGD setup fee. The fee is for our genetic testing, and for designing our PGD test program. A different testing program is designed for each couple, based on the specific genetic disorder and their DNA. This fee covers that cost. It doesn't include the egg/embryo testing, only the design of the testing program. We have to pay this cost ourselves when we submit our DNA samples, then we can try to get reimbursed later from our insurance.
  
• We both have to have several tests done, mostly fertility-related tests on me (hormone levels and what not), and have the results sent to RGI. We're planning to wait until my fourth cycle after my miscarriage to have this done, since I want to be sure my body has returned to normal for setting my baseline record.
  
• I won't be able to do my monitoring with an OB/GYN for a couple reasons. Some tests may have to be done on the weekend, and OB/GYNs normally don't do that. I'll have to go to a fertility clinic here. Also, it's better to go to a fertility clinic since they're more familiar with the protocols and whatnot. So we'll be going to the Washington Center of Reproductive Medicine for both our testing and my monitoring.

There's a lot to think about! I'm getting more scared about the hormone drugs. There's so many of them...It sounds like I'll have to give myself injections for awhile...!! I can't do that! I'm just trying not to think about it. I don't know what I'll actually have to take yet. It will depend on my test results. The medications are different for every individual. Since I'm young, hopefully I won't have to take as much as some of the other ladies I've chatted with online...I'm just trying to think that once I have our wonderful baby in my arms, I'll forget about all this stuff we had to do to get there...

PGD here we come!

We can do it! We can do it! Dana said that Baylor DID still have my CVS test sample, so we will be able to do the PGD!! I'm so relieved! I'm sorry, for those of you who are wondering, I forgot to ask whether we would have been able to do it for sure or not without that sample, but I'll ask her on my first official consult next week. So, I think it's really going to happen! She scheduled me for our first official hour-long phone consult on Tuesday next week. Then she transferred me to Dr. Ilan Tur-Kaspa's office to schedule my first official IVF phone consult with him for Wednesday next week. The doctor's office will be sending me a bunch of forms to fill out that I have to fax back before the appointment. The consultation costs $200-something (I was so excited I forgot to write down the exact amount), but that will be subtracted from my PGD fee when we do the PGD. It's non-refundable though if we do the consult and then decided not to do the PGD.

Yipee! :) Also, the countdown has begun. I've started my first cycle now since my miscarriage, and we're waiting four full cycles before doing the PGD.