Wednesday, October 27, 2010

Disturbing The Peace

Oh gawd, she's back. The whiny, and seemingly indecisive side of me that Infertility has capitalized on. And I'd love nothing more than to punch her square in the jaw.

I'm okay. But I think it's fair to say that last week was rough. I know that the three crappy diagnoses I've gotten in the last two weeks are not the end of the world. The hardest part for me was really that we've gone so long thinking that MFI was the only hurdle we had to jump. So hearing now that there are three significantly crappy issues on my side that could hold us back was pretty much the infertile equivalent of walking in on your parents. You turn away, alarmed, disillusioned, and in overall shock.

One more thing that sucks is that treatments could end up costing close to another 5k - worst case scenario. Which is pretty much infertility's way of pissing on the ashes that once was my retirement plan.

Now I need to clear a few things up. I'm sticking with Dr.3. I like Dr.3 (I'd say love, but we're still basically courting since I've only seen him in person once - and well, he hasn't gotten me pregnant yet - Hmm if you didn't know I was talking about IVF that statement could be misleading). AnyWAY, I believe in Dr.3. But I think it's my responsibility as a patient to question different and inconclusively proven treatments. While I'm not 100% sold on the immunological theories, my gut is telling me to go with it. Or maybe it's my uterus, since it's got a better view as to why SIX iui's failed...

Man, after taking two thirds of this year off, and away from treatments I've forgotten how truly overwhelming and consuming it is. It's like this whole other component in my marriage - it's like a second fucking job, even. Gah, I'm sort of tired of it already.

Cheese and Crackers, folks - NINE posts in one month. Are you guys sick of me yet, or what?

Saturday, October 23, 2010

Well, If They Don't Know...

I'd like to thank you all for your incredibly thoughtful and supportive comments on my last post particularly. I'm still digesting the information but I can see clearly enough now to know four things.

1. The ALI community is AH.MAZ.ING.

2. I'm grateful that these issues have been diagnosed now, and not after an IVF failure or miscarriage.

3. A big part of me feels like we had to go through the failures at our other clinic to get us to where we are now.

4. I'm perplexed. I really, really don't understand how certain controversial medical, and scientific theories are not actively proven either way. I understand the contentions behind the Big Bang theory, but in my uneducated opinion: that shit happened a long ass time ago, and there ain't much any of us can do about it until Doc Browns visions come to fruition in real life. But how is it that with all the technological advancements we have at our finger tips and with the issues in front of us now, that there is still room to argue about things like global warming, possible causes for autism, and immunology's impact on reproduction? I realize that it simply takes time to run proper experiments and compile evidence, and that it's not remotely as cut and dry as I'm thinking it should be. I know I probably sounds like a moron, but I guess my point is that I'm frustrated that there aren't any irrefutable answers. Yet.

Friday I had been emailing with a good friend and fellow blogger, Sarang about how frustrating it is that some doctors practice the immunological studies and some don't. (As was also pointed out by a comment in my last post, thanks LC). There are two MAJOR Universities near me that don't test for immunological disorders. During the second opinion we got at one of the universities, the distinguished RE we saw diplomatically told me that it was 'nonsense' when I brought it up. But just a few hours before that, the OBGYN who works closely with the RE I'm seeing now, told me that his miscarriage rate had dropped by almost 20% since he started following the preventative care methods based on the immunological disorders. i.e. the IVig, and intralipid infusions, and blood thinners for MTHFR - clotting issues, etc. Still, I can't overlook the fact that there are the big guns like CCRM who don't practice this...

What does that say? Is my RE a trailblazing pioneer or a bohemian maverick?

Friday, October 22, 2010

The One Where the Universe is on a Roll

I got the call regarding the last bit of my immunology testing.

It's not good.

My TH1 and TH2 and Natural Killer Cell levels are elevated.

I know this isn't the end of the world, but sure feels pretty close to it at the moment.

And I know it can be treated, but right now, I really don't know if I want to.

Fucking. Fantastic.

Thursday, October 21, 2010

How to be Misleading in an ICLW Description

You can start by abruptly ending your break (of 10 months) after attending a seminar given by the man who will become your new RE. After a phone consult reveals CD3 will be in just four days, you dive ankles first back into the stirrups. (for those of you keeping track that was six days after the seminar - four days after the phone consult) Two phlebotomists, twenty-four vials of blood and a baseline ultrasound later, you find yourself itching for test results whilst simultaneously remembering what it's like to be here yet again and suddenly becoming terrified that the test results could come back with BAD news... And they did... Not only was I diagnosed with OPCOS, at first over the phone then confirmed during my baseline u/s (which my first RE never caught), but my blood tests later showed that I tested positive for two A1298C mutations, indicating MTHFR. Which my first RE never tested for because he doesn't BELIEVE in Immunological Disorders.

Hi.

Still with me?

Good.

Here's some history!

My husband (35) and I (31) started TTC in the summer of 2007. I genuinely believed that we would get pregnant on the first try. Ha. Fourteen months later, we moved on to testing through my OBGYN's office which revealed a severe male factor. She promptly pointed us towards the RE who I now hate told us IVF w/ICSI or Donor Sperm would be our only hope. After MUCH deliberation we chose Donor over IVF, partially because it was the most financially attainable option and because we were concerned about the implications of the severity of his diagnosis might mean for our future children.

Fast Forward to December 2009 when we completed our SIXTH and final DIUI. All of them left us with straight up BFN's and a fair amount of debt. Our RE at the time and the second opinion we got a month later were dumbfounded and couldn't explain why none of the IUI's worked because my charts looked so great. Umm yeah, neither of those doctors caught the OPCOS which is clearly evident in an u/s and with knowledge of the fact that my cycle is 30 days. And interestingly enough, neither of them test for immunological factors... But at least I have an answer now as to why none of the dIUI's worked.. Not that it's any consolation.

That brings us to January of this year, I'm not going to lie- I was a complete basket case. We decided to take the rest of the year off to focus on our marriage and restoring my mental health. By March we had decided to plan for IVF in 2011 - with my husbands sperm.

Even though we had been planning for several months to attend the seminar on September 30th and follow up with a phone consult shortly thereafter. I really had no idea how quickly this would catapult us back in to the TTC/ART world. When I signed up for this month's ICLW, I thought it would be a nice way to tip toe back into the supportive waters that is the ALI community. And while I'm 1,000 percent ready to move forward, it's hard not to think about how comfortable and effortless things were just three weeks ago...

Thanks for stopping by, I look forward to reading about all of you.

Tuesday, October 19, 2010

What Has Two Thumbs

And tested positive for two A1298C mutations, indicating MTHFR?

Alright, we all know how that one ends...

So, craaaaaap. I guess with my OPCOS diagnosis and now this I can officially say we are a train wreck Male and Female factor IF. I know this isn't the worst possible senario, but having gone two and a half years and six dIUI's believing that we only had the male factor issue, well, it sort of makes me want to crack some skulls.

MTHFR is not something that my old RE would have ever tested for. Because it falls under immunological disorders. And my old clinic didn't believe in immunological factors... Some RE's do, some don't. And it's not being partial to CSI: Las Vegas over Miami, it's like different religions.

I thought science was a little more... black and white.

How does one not believe in a gene mutation?

I don't understand.

And more than that, I don't quite understand what this means for me.
And my likelihood of a successful pregnancy.

I'm scared.

I probably sound like a complete moron, and believe me, I know enough to know that I can't even begin to comprehend the complexities behind this issue. I just wish that I didn't feel so caught in the middle...

An MTHFR success story might be nice to hear right about now.

I've started reading up on it, but I don't really know what to consider a legitimate source. Any recommendations?

Wednesday, October 13, 2010

I'll Take "Financial Ruin" for $16,000, Please.

I had a conference call with our clinic's financial coordinator yesterday. Oy Vey, does this part suck.

This when the "oh yeah, this costs an assload of money" light bulb turned on. Not that I ever really forgot about it, but I'm wrapped up and snuggly in the idea that I might be pregnant in a few months so the rule of "Eyes on the prize" has jurisdiction over my brain. And my heart for that matter.

I don't talk about the financial side of this nightmare all that much here, mostly because I have a select few IRL friends and family that read this and I don't want them to feel bad, or like they should be doing anything other than supporting us emotionally - which if they have access to this blog they've clearly done an exceptional job at. I'm also a big believer in not discussing politics, religion, and specifics on finances (all to a certain degree). Really those topics just make things incredibly crunchy for me.

But in the true spirit of record keeping, and doing my best not to sensor myself , I find that I am overwhelmed with the urge to write about this. Mostly because I'm really struggling with it emotionally. We're going to be financing at least half of our IVF costs, and I constantly have to keep validating our decision to move forward to myself because technically, we do not have the money to do this.

If you've been reading my blog long enough you know that part of the reason we went the donor route before is because it was a lot more feasible financially. Which probably sounds callous but, after a few months of therapy I realized that our financial security is incredibly important to my sense of security in general, which translates to my overall well being. Not to mention how much of a burden finances can be on a marriage. And well, Infertility alone has already gone platinum on our asses so we won't be needing anymore of that, will we... We live very modestly. We haven't taken a real vacation since 2005. i.e. more than a long weekend that didn't involve a tent or the redeeming of hotel/airfare points, or bunking up with someone. Though our house was a big purchase it was a financially sound move.

Is it ridiculous that I'm still struggling with this so much, that I still feel the need to justify it even to a group of folks like you who totally get it?

I have to keep telling myself that this is a reasonable thing to go into (more) debt for.

That not spending beyond our means shouldn't apply to our dream of having a family.

That we can always make more money, but our window for having biological children is literally getting smaller every month.

So here's the actual genesis for this post: We will qualify for a 10% discount, but it can only be applied to a bare-bones IVF cycle that won't include medications (of course), extra monitoring ultrasounds during stims if needed; Cryo Preservation for the first year; or subsequent FET's (if the fresh cycle fails). So if the fresh cycle doesn't work it could end up costing us at least $3,500 more, not including meds.

Orrrrrrrrrr

We could pay $6k+ more for for the Two cycle program in which we would get first a fresh IVF cycle with unlimited monitoring, then FET's until we run out of embryo's. If all of that fails to get me to twelve weeks then we would be given another fresh cycle, and again as many FET's until we run out of embryo's, And it covers the first year of Cryo preservation storage.

So we can spend less (which we have the liquid cash for) on a BIG gamble, or sell a kidney to come up with the money to take less of a risk of us walking away without a baby...

Both options sort of suck. But either way, Top Ramen is starting to sound better and better.

Monday, October 11, 2010

Taking The Long Way

Hey kids, sorry for all the drama on my last post. I sort of forgot what it was like to have no control over my life whatsoever. Ahhh infertility, you haphazard bastard- I kind of missed you.

Okay, not really...

So my appointment wasn't all bad. Except for the part after I'd gotten home and realized that I had shaved one leg twice, and the other not at all. That must have given Dr.3 a great impression. ("She'll probably Follistim her eye out", I'm picturing him telling the nurse) And I know I did one leg twice, because I switched razor blades on the second round... In case the first explanation didn't quantify my incompetence enough for you.

I digress.

The ultrasound. Right. So I made Brian go with me. To a baseline ultrasound. At first I wasn't going to ask him to come, but then I realized that this was the first appointment meeting our new RE (whom I've named Dr.3) and I really wanted him there. And truthfully having him with me gives me a sense of calm. It's like having someone to sit with on the first day of school, ya know? Anyway, the ultrasound was pretty standard, he pointed out my uterus and the lining, my femoral (right?) artery pulsing, then went on to each ovary and the follicle counts. It was at this point that he casually mentioned the OPCOS, in the same demeanor I'd imagine he'd have if he was telling me I had green eyes. I realize that this is common place for him, and essentially good news, but all I could think about is how TWO other RE's who'd seen my charts and gave me ultrasounds had never seen this, but Dr.3 nailed it over the phone. Meanwhile the vein in my forehead began pulsing and I could barely construct a sentence. He finished up, and told me about the Metformin, while I nodded likely with my mouth open, and he sent us on our way.



I will say that I have not thus far, noticed any side effects from the Metformin. I've heard from two IRL friends that it can be pretty nasty so I was a bit apprehensive about starting it, but I'm grateful to say it's been fine. Except that I can't really drink alcohol with it. Not that I was a big drinker before, but Dr. Google says the use of alcohol with this medication can disrupt the normal functions of my kidney and liver... Not quite the same as putting up with the runs.


Having now had a few days to cool down, I am a little more grateful for the diagnosis and the fact that it's potentially a good thing. Dr. 3 wants to put me on a Long Lupron Protocol, though I'm very familiar with most aspects of IVF, the medication protocol is my weak spot. Have any of you done the Long Lupron protocol? So far I've read it's typically very successful for first timers but of course I've come across a few horror stories about over suppression. What say you veterans?

Wednesday, October 6, 2010

Something That Could Have Been Brought To My Attention YESTERDAY

Or two fucking years ago, before we spent six months and thousands of dollars on DIUI's that were NEVER GOING TO FUCKING WORK.

I have Ovulatory Polycystic Ovarian Syndrome. Different than "Classic" PCOS.

(Thank you Meg, for the link.)

Yeah, I've never heard of it either.

Maybe I would have, had I been diagnosed TWO FUCKING YEARS AGO. Because then I would have known that one of the symptoms of OPCOS is an elevated blood sugar level which can hinder implantation - KIND OF A BIG FUCKING FACTOR don'tcha think?!?!

So yesterday I had my CD3 Antra Follicle count. Our new RE (I need to come up with a name for him) wanted to see my ovaries in an "unchallenged state", meaning before there was a dominant follicle present. He quickly counted eight resting follicles on my left, and 12 on my right. FYI, the average for most women is about 10-12 total between the two ovaries. I have 20.

He mentioned something about this on the phone consult Saturday, but honestly I didn't have any idea what he was talking about, because I knew I didn't have any of the "Classic" Polycystic symptoms. But evidently he saw it coming because I have a 30 day cycle, which is a indicative of women with OPCOS. The only good thing about this is that it means I am likely to yield a higher reserve of follicles on a low dose of stims.

He wants me to start on Metformin asap. He says it will essentially make me "more fertile". And thanks to the link Meg sent me, I now know that is because the Metformin will regulate my insulin levels therefore bypass any implantation problems. He also said he will keep me on it until I am 12 weeks along, because it can also decrease the risk of miscarriage for someone like me.

I know I should be happy about the fact that it's finally been diagnosed, and our RE just kept reassuring me that it's actually a good thing because it means I'll be a better than average responder. But just having found out - I'm pretty hung up on the fact that this wasn't caught sooner. It kills me to think about how much time and money was wasted, but most importantly how the failed cycles caused such an epic amount of unnecessary heartache. Really the time and money was one thing, but the depression that followed not only comprimised my marriage but has forever changed who I am as a person.

Oh and now I have to sit with what else could come back from the rest of my blood tests. And all TWENTY-FOUR vials that they took!!!! It was twenty three, but the lab called later yesterday afternoon to tell me they had forgotten one. GAH. And fuck, what if the insurance deception doesn't work?!?!

Commence Meltdown.
(Number One)

Monday, October 4, 2010

Been There, Hoped That

Even though ninety-nine percent of me is brimming with excitement over our upcoming cycle and testing, there is still an echo of the fact that we've been here before. And more than that, I can't help but think of how many of you out there are still struggling after having switched clinics in hopes that the next ART cycle would be your last (meaning you got, and stayed pregnant) but then, to no avail...

But I can't keep thinking like that. Every situation is different. And it'll be in my best interest to stick with the positive thoughts instead of the "fuck,what if..." thoughts. No need to unearth the crazy just yet.

So the phone consult went great. Really, really great. He instantly acknowledged that we'd "been at it for a while". Yes, indeed we have. He said based on my previous test results, he was rather surprised that none of our IUI's worked. And if you're keeping count, he is the THIRD RE to make the same comment. He said after, six dIUI's, there would have been at least a 50% chance that I should have had some sort of positive. So he'd like to run a full immunological blood panel, as well as a refresher on the standard tests. And he was happy with the results of my first HSG so I won't need to do another one - yippiekiyay motherfucker, that shit hurt. He did say that he was slightly concerned that I may have an ovarian issue of the Poly Cystic variety - EVEN IF I'm ovulating regularly. (Boo.)

As for Brian, the doctor was very pleased to hear that he'd been on supplements since June. He'd like to get a current SA done, and would also like to bank 2-3 vials of his sperm for our IVF cycle. He said Brian will of course need to provide a fresh sample the day of my retrieval, but this will give us a fall back in case there are any issues with his sample on the big day. I feel really good about that.

After he finished his side of the questions he opened the floor up to us. My first concern unfortunately, was about money. I told him that we had met with an OBGYN earlier in the year who mentioned working with him. When we met with this guy in January I thought he was a total yahoo (still do), and referred to him here as Dr. Do Little. His only saving grace was his affiliation with our Doctor and that he offered to run a blood panel for me under "Infectious Diseases" as opposed to "Infertility" so that it would get covered by our insurance... This is the same exact panel that our new RE would like to order. Since I knew that might be the case I called last week to see if they would still be open to the insurance deception, and much to my delight they agreed.

I'm pretty grateful that my cycle just happened to coincide with the seminar and phone consult, so tomorrow I will go in for a CD3 blood panel, (FSH, Estrodial, etc.), then have three separate vials drawn for the immunological tests which will be shipped off to Chicago. And last but not least our RE would like to see me for a CD3 Antra follicle count (ultrasound). Not really looking forward to that one, but it will be nice to meet him formally. Can you even call it "formal" if I don't have pants on?

Anyway, one more good thing. He said we qualify for both the Shared Risk Program- where we'd get 90% of our money put back on our credit card refunded if a fresh IVF cycle and subsequent FET's did not result in a pregnancy exceeding twelve weeks; and the Two Cycle Program - in which would would be given a substantial discount upon paying for two cycles upfront. The jury's still out on this one, vacillating blog post to come.

In summation my friends, I'm pretty fricken excited. Moderately terrified underneath it all, but so, SO ready to move forward.