still not approved to start IVF #2, and going mad...

farmerlynda

warning:  long...

Seriously, each time I think that I have cleared "the final hurdle" to be approved to get my IVF cycle going, my new clinic throws up another one.

First, they wanted me to do more genetic testing which my winner of a health insurance company wouldn't cover.   Since two previous clinics hadn't even told us about this particular testing, and since we already had the cystic fibrosis testing (negative), and since it would cost thousands of bucks OOP, I signed a waiver saying we didn't want it.  (By the way, the clinic recommends that all IVF patients have these tests done. In order for the baby to be affected we would both have to be carriers, and the odds of being a carrier for one of the diseases was 1:1,200 for men and 1:2,500 for women.)

Yesterday, I had my saline sono and mock transfer, which was supposed to be the last hurdle.  

Then this afternoon I got an email from my nurse coordinator saying that they still didn't have DH's records from the male fertility specialist (gee, thanks DH for taking so long to fax that form)... and, by the way, did DH have testing done for Y deletion and genetic karyotyping?  Because if he hasn't, the RE strongly recommends that he get that testing done before proceeding with the IVF cycle.

The email added that I could stay on the BCPs (you know, the ones that have turned me into a giant ball of emotional mess and are giving me miserable headaches) for another month while the testing gets done.  Well, that's fabulous.

DH hasn't had these tests done, because we have already spent thousands of dollars OOP going from specialist to specialist trying to figure out what is wrong with him.  And all of those specialists said that, based on DH's pattern of infertility, the likelihood of it being caused by genetic factors is basically nil.  Basically, he was fertile for a long time before becoming infertile -- longer than anyone who has Y deletion problems would be.  And because he had radiation therapy, it is highly likely that the radiation therapy caused the infertility.  That was a good enough explanation for two male fertility docs and they didn't insist upon the testing so I'm not sure why it's not good enough for the RE.

Anyway, I called the nurse to say that we are not going to get the testing done.  She said she'd pass that information on to the doctor and hopefully we'd get a calendar approved by tomorrow.

Ugh.  I'm getting really nervous here because if I have to wait until April and stay on BCPs for two months I am going to fall apart.  Or punch a hole in the wall.  Depending on how my birth control mood is at the moment.

Am I being dumb to refuse all this testing?  Or is the clinic being dumb in recommending too many insanely expensive tests?  They just seem to assume that because I have insurance I can afford them.  But my insurance won't cover it.  WWIFD?  

Trish11278

I would have done the same thing!  Try to stay strong, I know you can do it!  Hopefully tomorrow you will have wonderful news and breath a huge sigh of relief.

Roxie5739

FWIW, I would have done the same. There is no evidence either way and for some reason your new Clinic seems to just be gathering data and not really looking hearing you. GL with getting that calendar!

rockpaperlove

I think it is nice that they are offering the additional testing to produce the best possible outcome for you, buuuuut unless you find it absolutely necessary...pass it by so you can get your show on the road.  Don't forget to take it all in one day at a time.  Wishing you lots of luck.  (((hugs)))

Bethany1026

oh no!  I'm sorry it's taking forever to get back in the game...I think that those new genetic testing requirements were new for 2012...because I just had to do some too!  Are they able to switch to a lower side effect BCP for the meantime?  I would think Ins would cover these tests especially if there is a family hx or anything, maybe there is another fee schedule for OOP testing?  This sux   I hope everything gets cleared up fast!

Gregermis

Go for the hole in the wall!  But make sure you don't close your fist all the way

So sorry girl... I think you are handling it correctly.  You have sound reasons for turning down all the testing they want you to do.  I hope you can get approved soon!!

LaLe09

Not sure what kinds of genetic tests you are being told to do. We did the Counsyl spit test on DH. It was *i think* like $350 and tested for a long list of autosomal recessive diseases. We also had karyotypes done on both of us. As far as a the y-chromosome microdeletion goes- it doesn't sound like anything would change as far as your treatment plan goes. (You will STILL be doing IVF with ICSI regardless of what the test says). If the uro doesn't have anything to offer, I probably wouldn't get it done in your case. My hubby has a y chrom deletion and we have basically made no progress at all since we found out... they don't have much to offer for him.

Good luck! I'm sure it's extremely frustrating starting over... it'll happen!

NMscubagirl

I would have done exactly what you did. I really hope they approve you to go forward this cycle. GL doll!

lynn0926

NMscubagirl:

I would have done exactly what you did. I really hope they approve you to go forward this cycle. GL doll!

This 100% especially since his MFI is related to having had radiation. 

marieinmonaco

No, you are not being dumb at all! It is all what you feel comfortable with. I would likely have done the same in your shoes.

I know this is different but we refused PGD for a known genetic defect when my RE was being insistant upon it. I felt so guilty for declining it at first but in the end it wasn't absolutely necessary & he changed his recommendation.

I am sorry about the possibility of having to wait to April. I would really hope this will not be the case! Your dr. should understand your wishes.

I'll be praying for you for your new IVF cycle! Please don't go mad! One day at a time! 

XV11Star

I am sorry, how frustrating!  I think that I would have done the same thing as you.  Ha - anything to not do another month on the evil BCPs!   :-P  Good luck Lynda, hope you can get some good forward moving news soon.

4legsRbest

IMO if you are comfortable with the knowledge you have about your history and the hurdles you need to overcome and think you can do it as you see fit, I would skip the testing. I always ask "will it change the protocol?" If it it a resounding no, then I am content to ride it out and see. I like to put faith in my drs I trust but behind the curtain the medical community has other motives and most of the time these are done at our expense. It is the price we pay for westernized medicine.

BCP suck, bad! I hope you can move forward quickly and trash those nasty things!

bandwife928

I would have made the same decisions you have made refusing further testing.  Unfortunately, that's a decision many of us OOPers have to make.  Sure I'd love to know everything there is to know about what we may or may not be carrying around.  However, it becomes a financial decision weighing the odds versus the best use of our IF dollars.  ((Huge BCP Hugs))

maggie2324

Oh no! They better not make you wait until April! 

It's one thing to recommend testing, but they shouldn't force it... Especially if it's OOP. That's ridiculous. 

farmerlynda

Gregermis:

Go for the hole in the wall!  But make sure you don't close your fist all the way

LOL, Gregermis, you totally made me smile with this.

And sorry for the post-and-run, everyone, but thank you so much for all your advice and support!  I'll post as soon as I know whether or not I'm cleared, and I feel much better now about bypassing the testing.   I wish that money and time didn't matter in this decisionmaking proces, but they do!

Also, Bethany, that's really interesting -- maybe these crazy new suggestions did just come on for 2012.   It seems a little overkill since the odds are so low.  All of them are recessive traits, too, so even if we both were carriers we'd still only have a 1 in 4 chance of the baby having it, making the odds even tinier.

I also just always think -- lord, if we'd been able to just have sex and get pregnant, there's no WAY we would have done any of this stuff.  It is starting to remind me of the movie Gattaca.  Sure, since we're spending so much money it makes sense to be as safe as possible.  But enough's enough!