Monday, September 29, 2008

Genetic Testing-Advice Centainly Welcome!

My returning HMO coverage begins in a few days. Yeah, boyz! Who knew an HMO could stir so much excitement? Sure, they once gave me 100 pages of someone else's records and sure they once listed me as taking birth control pills the very same month I was having an IUI (4 years after my very last bcp), and, oh yeah, I almost forgot, I once spent an entire 20 minute phone conversation trying to convince a nurse that the ectopic pregnancy listed in my records had never actually happened (think I would have noticed), but hey, they're cheap. Gotta love 'em. And I'm a cheap ass. And that makes for a generally symbiotic relationship.

Yeah, I was totally the kid who picked a fallen cookie off the floor, no matter how hairy, dusted it off, and chewed happily, all courtesy of the 10 second rule. It just doesn't take much to please me. I'm hoping to change that tune, especially when I break out the big guns, otherwise known as IVF. In the meantime, the other acronym in my life, 'HMO', still offers me the basics and before moving on, I'll get my fill of that hairy cookie and I'll like it! This means that blood work is part of my co-pay, so all of those nastily expensive genetic tests that we coughed up some pretty shiny pennies for this summer will be hereby delegated to their budget instead. I know where their strong points lie (cost) and their weak points (records organization and general competence) and I will be sure to take advantage of the former.

Luckily they haven't done anything too medically heinous (like leaving a catheter in or giving me someone else's husband's sperm-although that might actually help, lol), so they're a keeper, for now. Thus, enter more tests. So far, Mr. S and I have both had CF testing. In addition, the mister has also had karyotype and Fragile X testing. As far as those tests are concerned, we're in the clear. The question now is, what else should we be tested for? Any ideas?

Look, I'm no masochist. I don't get off on getting needles shoved in my arms by grumpy phlebotomists first thing in the morning, or even taking advantage of HMOs, but I do enjoy avoiding further expense and heartache. For instance, if we need PGD, I'd like to know beforehand and not withstand more devastation and loss (emotional and financial) to get to that point. I think the hairy cookie HMO is just the place to do this. I just have a feeling they're going to scoff at my request.

Firstly, I suspect that they're just as cheap as I am, which, as a card carrying cheap ass, I can fully appreciate. That fact alone will keep the genetic testing gates closed for us. Second, I have a feeling they'll counter with the fact that so far, there is no evidence that further testing is needed. Sure, I haven't had multiple losses...yet, but you might recall that we're infertile. Does that ring a bell, big hairy HMO? I think that's plenty of evidence. Still, I think the argument needs a little fine tuning.

Preventative medicine doesn't seem to be a trend quite yet, but I'm clearing the way, folks. I refuse to wait for another loss or another disappointment that could have possibly been prevented. And in the world of medicine, the only advocate you have is yourself, so my request will be persistent and if need be, loud. This angle is so opposite of my personality, but when you want something bad enough, you'll do anything to get it. We all know that too well...

Starting tomorrow, I'll be asking for my own karyoptype testing and MTHFR. I'll also be wondering, quite out loud, whether I might have LPD. I do realize, as IF has so masterfully taught us, that not everything can be controlled, but I'll be damned if I don't take every advantage the advances of modern medicine has to offer me. I do realize, also, that I may never be gifted with the answers that I so desperately seek. We may never have the 'why' of our IF, but in my pursuits, I'd like to at least erase the 'what if'.

8 comments:

Another Dreamer said...

Woo, you go with your bad self!

I think it's great to push those things, I hope they take you seriously... I know that the health care personal don't always take us seriously. It's rather infuriating.

Nikki said...

Maybe ask for some immune testing too - like your ANA etc.

It would be great if you could get them to approve those tests for you! Pave the way for preventative testing for everyone else!

Have you had your ASAB done? (Anti Sperm Antibody). My RE here had not run that test, but CCRM did it during the 1 day work up (yes, it came back normal, but still...)

Good luck - let us know how it goes with the HMO!!

Sally N said...

You noted that the "mister" had fragile X testing? What about you? Did they test you, with a southern blot and PCR analysis?

Approximately 20-28% of female carriers of fragile X suffer from POF/POI.

I Believe in Miracles said...

No idea with other tests... but I would love to erase the "what if". It seriously haunts me.

Good luck!!

Tara said...

I have no idea about any of the tests you listed. I have a lot to learn...

R had the CF test done - my RE said that if one person wasn't a carrier, then it didn't matter if the other person was. I hope that is right.

I am glad you are pushing - you are right - no one is going to push for these things for us - we have to do it ourselves!

GOOD LUCK!!!

Lorraine said...

I just had the ANA and antithyroid antibodies tested under the guise of checking for sjogren's syndrome. My throat had been feeling really dry for a long time, so that's one of the tests they ran - and it was covered since it wasn't related to infertility. But I got to cross it off of my list of tests my RE wants me to have. So - um, maybe your mouth is feeling dryish?(Mine turned out to be a side effect of my asthma inhaler.)

I think there is a thrombophilia panel that checks for all the blood-clotting problems. Maybe you can get them to cover that under some other code? A friend of mine had to lose three healthy pregnancies before her hairy cookie would test her for Factor V.

I am SO fascinated by genetic testing. Have you heard of that spit-testing company that can give you reams of data about your genetic makeup? If I wasn't broke from IVF I would definitely pay for them to analyze my slobber.

Shelby said...

I love it. I knew tapping into other brains was a good thing considering how dried up mine has gotten lately.

As far as ASAB, I haven't had that.
And as far Fragile X, I've had no testing done in that arena as we're diagnosed MFI and I don't suffer from POF/POI, that I'm aware of. My hubby does have a family history of developmental disabilities, so it made sense for him.

And yes, as I understood it, if one person is not a carrier for CF, it doesn't matter if the other is. But I was only tested for 35 or so strains when Mr. S. was tested for all 93 (or something) given that there is a link between MFI and being a CF carrier.

The only problem I have now is, how do I present this long list and agree to them buying into it? I need to get my creativity into gear!

luna said...

glad you got some decent coverage. I've been in insurance hell lately. sounds like you've got some good advice about the testing. good luck!