Tuesday, October 7, 2008

Follow up, but still no answers (LONG)

I am back from my follow-up, but that does not mean that I have any answers.

The short story - RE suggests IVF with PGD. PGD = Pre-implantation Genetic Diagnosis

The long story:
The RE does not have an answer why I have had 3 losses. At this point, any pregnancy (on our own or IUI) has a 30% chance of m/c. 30%! That is high. This is strictly based on my history, most women have a 15% of m/c in any given pregnancy, so my odds are double that. At this point, he thinks there is a strong possibility that it is embryo quality.

Embryo quality - must be FSH, right? Nope. I asked about my FSH for the past 4 cycles - he said they were all between 4 and 5. These numbers are awesome for those that don't know. If I was creeping close to 10, then maybe that was a problem.

Embryo quality - could be age, right? At 34 (and normal hormone levels through-out), my RE thinks this is BS.

Embryo quality - well, could just be crappy eggs. The only way to know is PGD.

The RE explained the whole IVF PGD process to me and also advised that it might be better to wait until the new year (our plan anyway). Now, my clinic has hours every single day of the year - except Christmas. But, even though they have hours, the genetic lab where they have to send my embryos does not work every day. In fact, it might be possible that I go all the way to retrieval and everyone at the genetics lab in on vacation for the holidays.

He basically said that unless we start the IVF process with the next cycle, then we might be caught in a bind. He also said that he tells all his patients the same thing, not just me.

If we do IVF, we would be waiting until Jan at the earliest anyway. At least that is one less thing to stress out about.

He wanted to stress to me that I have to be prepared for good and bad news with PGD. Well, what does that mean. Basically, I might be given info that SUCKS. For example, let's use 15 eggs at retrieval day.

If 15 eggs are mature and make 15 embryos, it is possible that 14 are abnormal and only one is good. In that case, it seems worth it that we did the PGD, because we would only be putting back the perfect one. Sounds like a good thing, right. Not really.

What about the other 14? That is not good news. In math terms, it would mean that 93% of the embryos were bad. And that in general I have crappy eggs. Of course they would still transfer the perfect one and hope for the best. But, to me, that means not doing IVF again after that.

The main reason why my RE is saying the PGD will be the best is the fact that at least one of my m/c was due to chromosome issues (trisomy 22). One was inconclusive and one there was no testing done. We had the RPL panel done and the only thing that came back is MTHFR - will go into that later. Also, both my husband and I kryotyping done. I am not 100% sure what this is, but I know it is something to do with chromosomes. We were both 100% perfect. We never had his actual sperm tested for anything other than the SA, which came back great. All IUI numbers have been great as well.

I could also go into IVF w/ PGD and come out with 15 perfect embryos. Obviously, we would not transfer 15, but then we would have some for possible freezing. The RE also reminded me that even transferring perfect embryo(s) does not guarantee a pregnancy or a successful pregnancy.

In the case of a non-successful pregnancy after IVF, there can still be unexplained reasons for the loss. I did ask about the MTHFR and the low progesterone. He assured me that 1)prometrium supp taken vaginally do not appear in blood; and 2) I don't have the MTHFR that is the blood clotting version. All of my homocysteine levels have been way under the "normal" range. This means that heparin or lovenex is not the answer.

The RE also reminded me that sometimes with PGD, the embryo gets a little damaged, and sometimes this damage prevents proper implantation. So it is like a catch 22. you do the PGD to get the best embryos, but doing that there is a slight chance that perfect or not, it will not implant. The chance is slight though.

Another major obstacle is the cost.

TRUST ME - I am grateful that insurance is paying for a lot of my treatments. I know there are couples out there that are paying for everything out of pocket. I know that what I have to pay out is pennies compared to what other have already paid. However, the cost is still there. And, it is going to be a lot of money - even with insurance. So, please do not think I am complaining about the cost - but this is something we will have to save for and budget for. And yes - I do know that without insurance, IVF would not even be a possibility as it would cost about $16,000 (or more). I am VERY grateful for the opportunity to live in a state mandate state and have great insurance.

I found out the PGD is covered by insurance - kind of. The cost of the biopsy (through my clinic) is covered. But, the transportation to the genetics lab is not. Plus the genetics lab does not take any insurance payments. Yes, there is a possibility that I can submit the paid invoice to the insurance company and might be reimbursed - especially since they said that the PGD was covered.

So, here are the costs that I will have to pay:

$40 - CD3 office visit - insurance co-pay
$200 - Injectable meds (follistim, cetrotide, menopur, ovidrel) - insurance co-pays
$160 - 4 additional office visits before retreival (I am guessing) - insurance co-pays
$500 - anesthesiologist (retrieval)- does not take insurance - may be able to get reimbursed
$500 - Embryo Transportation fee to the Genetics Lab - insurance does not cover
$2800 - PGD for 12 chromosomes (Aneuploidy screening)
$40 - transfer of embryos - insurance co-pay
$1150 - Embryo freezing and one year storage - insurance does not cover
$20 - Folgard Rx - Insurance Co-Pay
$40 - Prometrium Rx - Insurance Co-Pay
$40 - Progesterone check - office visit - Insurance co-pay
$5490 - Total

Of that total - it is possible that we might be able to be reimbursed $3300. And if we decided not to freeze any embryos, that would reduce the total by $1150 as well. But, if you think about it - if we did not freeze any, and decided to do IVF again, then we would have to pay for the PGD again. I guess if we went through that whole pgd process, it would be stupid not to freeze the good ones.

This amount does not include any pregnancy office visits if we were so lucky to get pregnant.

That is a lot of money - money that we really do not have.

I am going to be talking to my husband tonight - so he can basically see all the numbers himself.

So, now we have to decide if IVF is something we want to do. We might possibly seeks other options (adoption) at the same time as other medical treatments - who knows.

So, if you made it this far, thanks for reading :)

Oh - and as a PS - I totally forgot to ask the RE is he could Rx something to help me sleep - even though I totally wrote it down.


Leah said...

I know I've mentioned my friend Kelly who has had 4 miscarriages...she is going to the RE tomorrow for the first time. I'll let you know what he says about her situation...since you both are similar. Has your husband been checked out? I read a blog and the girl had 3-4 m/c. When they went to the specialist they found out that it wasn't her eggs...it was his sperm. Bad embryos are not just an egg issue. Just a thought...

Jill said...

Wow -- that is a lot of information to process. You and your DH are in my thoughts -- I hope that you can come to a decision that makes the most sense for the two of you.

stacey said...

What alot of info to process. In sounds like you have a good plan in place to keep moving forward. Hang in there!

Lisa said...

Thanks for taking the time to go through all of that. I am going to have a call with my RE tomorrow to discuss the same sorts of things. I am just beginning down the recurrent loss road and it helps to hear about your experiences, although I am sorry you are having them. I will update my blog with any enlightening information.

Maria (MKC101103) said...

I hope you and your DH had a good conversation about this last night. I know it's tons of information to digest. I'm sure you'll come up with the right solution for you and your family.

Ariella said...

That is a ton of info but it sounds like a good plan. I am sure IVF is scary not just the $$ but emotionally too. I know my Dr runs a sperm test to check for abnormalities, if that isn't part of the plan yet maybe ask about it. Like Leah said bad embryos aren't just about eggs.

Sending you lots of love and hugs to get through the rough weeks ahead. Hang in there!

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