Tuesday, May 13, 2008

What? Why?

So, I get a call from my nurse giving me the update calender and telling me that Dr. S wants me to meet with a genetic counselor to discuss genetic testing of my embryos. WTF? I have had an ectopic with IVF#1 and a failed FET, with no other fertility issues other than blocked tubes (now only one blocked tube) and am 33 years old. I only had 13 eggs last time which is what they expected and 11 fertilized with ICSI.

Why is there this urgency to discuss genetics when IVF went "SO WELL" and that I had "just bad luck with ectopic and the FET". He even went so far at our regroup to say "I am not worried - IVF will work for you". I called to ask Dr. S about this and he said (through the nurse) he just recommends this after 2-3 failed fresh IVFs - ok well that is not me yet, so why are you recommending it (another discussion with nurse). Dr. S (through nurse) says to have the genetics consult then regroup prior to IVF cycle in July and we can discuss and decide from there. He thinks the genetic testing will increase my odds and will tell us more about my IVf cycles.

Ok, 1st off - PICK up the frigging phone and call your patient and discuss these things - don't have nurse call numerous times and have to relay info they don't know. 2nd off - I still don't have the answer to why - is there something wrong or is this another attempt to make money (more consults and the very expensive genetic testing)? Keep in mind, the "palace" is doing the very new 23 chromosome testing - it is a freeze all cycle and a frozen transfer of genetically normal embryos (if any) @ 3months later (because it takes that long for the results and to recycle the body). Supposedly, it increases your odds but ok how much would it increase it for me? And if it is so new, how can you have relavant data to say it increases it?

I was all excited and positive for the next IVf and now they have freaking stressed me out and worried me about it even working at all. Anyone out there have any advise? Anyone do numerous IVF and a later one work without doing or being suggested to do genetic testing? Anyone have numerous failed IVF and then do a genetic testing IVF and it work? Any input, help, and/or hope would be appreciated!

6 comments:

Antigone said...

I was referred to Dr. S after my stillbirth for additional testing. I've never had any trouble getting pregnant and after having every test on the book nothing came back positive. His response was to advise IVF with the genetic test. It made no sense to me and during the regroup he couldn't explain his logic.

Sketchy.

Denise said...

Huh. He recommended we meet with a genetic counselor up front because of my eastern european Jewish descent, but we declined and he hasn't brought it up since. We had two cycles that we made it to transfer and were negative and he still didn't bring it up again. I'm surprised that he is pushing this for you.

I've found that if you insist on speaking with the doctor instead of a nurse, you can usually get there directly, but if you don't ask, they won't offer. If it doesn't make sense to you, I would call back and either ask to speak directly to him, or tell the nurse you want to decline the testing because it doesn't seem to make sense.

Jen said...

I am perplexed as to why he is insistent on genetic testing.

I'm going to e-mail ya and tell you what I know and don't know...

Super O said...

Oh geez, that really sucks. First of all, insist that you get a call from your doctor. I sometimes had to do that. You're paying him, so just say, "I need to talk to Dr. S, and not his nurse".

When I did my second cycle, I ended up getting myself talked into a procedure that I regret doing. I had a 0.4% risk of something going wrong, but it happened, and no one bothered to tell me of this risk with the procedure. Had I researched it myself, I would probably have discovered the risk, but I was trusting my doctor and embryologist. Lesson learned: research everything yourself that your doctor recommends you doing. Go with your gut feeling and don't make decisions based on fear. I think doctors recommend more procedures based on fear than fact sometimes just to cover their asses.

You and your husband can also do a bunch of genetic testing up front to see if you might have any problems. This will give you more information on whether you really need to do genetic testing or not. My insurance would cover this type of genetic testing 100%, whereas they wouldn't cover anything IVF related, including PGD and the likes.

HeidiM said...

Not sure if you have Dr. Su or Dr. Sc. I have Dr. Su and he pushed PGS/PGD on my current (2nd with them, 3rd total) IVF big time. I had to say no the doc at two separate meetings, and even after saying no, the nurse didn't order progesterone and estrogen because she had it written in my chart that I was doing PGD.

We were told to do PGD because it will tell us if we are wasting our time with IVFs with my eggs, and then we can close the door on that option if the test says no eggs are good and move onto DEs. But we were also told that if IVF #3 doesn't work, that will tell us that no eggs are good as well (as we have no dx & I'm 37). So I don't know if it's another way to push people toward DEs, another way to boost their stats by avoiding unsuccessful x-fers, if they just want more experience with it, or what.

It's interesting that it's a common sales pitch.

Meg said...

I have no advice on the IVF but I do agree that you need a personal call from your doctor. Ask a million questions to get at why....and if it seems like the reason points to they need a new tower built at at the palace....say nay!