TWW: Getting Antsy and ANGRY

Here I am, 9 DPO and I'm starting to get antsy. E asked me the other day when I could start testing, he wanted to know as soon as possible and was hoping it would be soon. I looked it up on my Fertility Friend calendar, as if I haven't been counting the hours, and told him the soonest I could possibly expect a result was Thursday, at 10 DPO, and even that was pretty early. 

According to countdowntopregnancy.com, If I am pregnant, I have a 67% chance of getting a positive and a 33% chance of getting a false negative at 10 DPO. 33% is still a pretty high margin for error so I'm nervous to test with those odds. I think I'd rather wait until at least Friday.

In the meantime, I'm still fuming over SCOTUS and Hobby Lobby. I just can't accept a world in which we legalize gender discrimination and grant corporations personhood. For those thinking it would just be IUDs and the morning after pill that got the shaft, think again:

"The Supreme Court on Tuesday confirmed that its decision a day earlier extending religious rights to closely held corporations applies broadly to the contraceptive coverage requirement in the new health care law, not just the handful of methods the justices considered in their ruling. 

The justices did not comment in leaving in place lower court rulings in favor of businesses that object to covering all 20 methods of government-approved contraception. […]

The justices also ordered lower courts that ruled in favor of the Obama administration to reconsider those decisions in light of Monday's 5-4 decision." (Source)

I'm so angry. So, so, so angry. And disgusted, and angry all over again. Need an IUD to help prevent cervical cancer? Nope! Need birth control pills to help regulate your hormones? Nope! Got raped? No morning after pill coverage for you! Need birth control because you have a genetic condition that causes half your babies to have horrible defects? Nope, no coverage! DON'T WANT TO GET PREGNANT? NO.  NO COVERAGE FOR YOU.

FUCK America, what the fuck are you thinking?? I don't know how this happened, how we could have such a horrific setback in women's rights. 

If you've got a penis though, don't worry, they've still got your back Hobby Lobby is happy to keep paying for vasectomies and Viagra.

Fuck.

Injections Day 3 and OOP Expenses

After crossing everything I have and holding my breath and arguing and hoping that my insurance would come through and pay for my meds, they have predictably decided not to cover them.

E and I were not expecting to be shelling out this much for a week's worth of medications, but since we have no other options, I called a every promising pharmacy I could find and comparison shopped. I think I've got the best prices I'm going to find between two different pharmacies so I'm heading over tomorrow to pick everything up. I still need to get 30 vials of Menopur, one Ovidril injection and 30 Endometrin capsules.

Today was also day three of my Menopur injections and this one was probably the most physically uncomfortable. There was a bubble that was a huge pain in the ass to get out and then the liquid burned like hell going in. It's still uncomfortable now and I'm starting to think my left side might be more sensitive than my right. Bleh.

Positive thoughts. I'm thinking positive thoughts.

IUI: The Disasterous Beginning

So after years of trying, we're finally starting a process that just might work. Today I went in for my baseline ultrasound that gives the RE a starting point for my IUI. This was the hopefully beginning of the post that I wrote this morning before I went to my appointment. It's not the opening I would have chosen afterwards. That would probably go more like:

I went to my first IUI appointment today. The ultrasound went great but the latter half the day was a complete and utter disaster.

I got to the hospital on time, with the 15 minutes to check in I always seem to miss, and after circling a couple times I lucked into the best parking spot. 2 hours of free parking? Yes please! I thought this was a sign our IUI was off to a great start and gave myself a mental fist bump. 

I met a new OB/Gyn and some really sweet nurses who were great company while they checked me in. I couldn't pee right away for the pregnancy test we all knew would be negative, even though I'd guzzled water, so the nurse let me proceed and said I could pee later. The ultrasound itself was a little uncomfy (as if a wand going up your girly bits could ever be anything but uncomfortable) and I had 9 antral follicles! That is AMAZING for me,  I've never had more than 7 follies. I would have danced on the table but the OB still had the wand so I settled for telling her how pleased I was with my body and how acupuncture seems to be working. 2 extra antral follies after only 3 acupuncture sessions and a week and change of herbs? I'm sold.

(I love your comics Phoebe Potts)

The nurses have the routine down, so after my ultrasound I went over my treatment with the OB and discussed the massive amount of meds I'm going to be taking. She was nice, was familiar with my file and we joked about the insane prices of donor sperm. There is always a long line at the pharmacy, so the nurse had me go down and put in my prescriptions before getting my injection training. I went back up, watched the nurse mix pretend Menopur, she told me how easy it would be to inject myself and then sent me on my way to go pick up my meds. I still hadn't peed yet.

As predicted, that pharmacy line was LONG. It took me about 30 minutes to get through, standing behind a high school student hiding a pregnancy test against her leg and hoping no one would notice. I felt badly for her and hope she got the negative she wanted, she was clearly terrified and wishing to be anywhere else.  It's nice to know I'm not so dead inside that I would resent the fertility of a scared teenager, though I did resent the lazy father telling his 2 year old he was going to tie her up (stroller) if she didn't sit still and be quiet. She's 2 asshole. 2 year olds aren't designed to sit still and be quiet, with no entertainment, for 30 minutes.

Finally I get to the front of the line and the pharmacy assistant starts pulling out box after box of drugs. There's a crap ton of menopur, my ovidrel trigger shot, progesterone, needles, and syringes. She starts ringing them up:

Her: Wow, this is over 1000 just for this? 
Me: Yeah, fertility treatments are expensive :/
Her: This is expensive, over 2000!
Me: You mean before insurance? Cause we should have 100% coverage
Her: Uh, no...you pay 100% All of it. $2000 please.

SCREEEEEEEEEEEEEEEEEEEECCCCCHHHHHHHHH

We are NOT supposed to pay 100% out of pocket! The whole reason we switched around insurances and paid a fortune to the union was so we would have infertility coverage! It's been confirmed numerous times by different people and now they're telling me to fork over $2,000 for a weeks worth of meds?????? I explain all this to the assistant, she enlists another assistant and freaking out, I head back upstairs to go pee in my cup and panic. 

I explained the whole thing to my nurse, and then to my doctor, who also insisted we should have coverage. When my nurse called for help, the pharmacy services insisted we had no coverage and hung up on her! I couldn't believe it and I kept trying to get ahold of E to ask if I should go back down and spend $2000 on the meds since we can't not have them. While I was doing that, the nurses were angels and scoured the office looking for donated Menopur for me. I was so thankful I almost cried, they found 4 boxes, which is 5 days for me, and told me to call back in the morning to see if we can fix things. If not, my doctor said she'd put in a prescription at a cheaper pharmacy for me and we'd just have to pay out of pocket. The nurses kept saying they hoped the donation would pay off with a baby, and I didn't have the heart to remind them there's a 50% chance I might have to terminate if it works. I almost cried again.

With donated Menopur in hand, I went back to the pharmacy and paid for my needles and syringes. They were really apologetic but I had to leave without the rest of my meds. I drove home somewhat shell shocked, where I met my mother who wanted to talk to me about my premutation. Apparently, although it's insanely rare, my premutation was passed down by my father, not my mother. She wanted to talk, discuss options, make me an appointment at UCLA and offer us money we're not sure we're comfortable taking. I wanted to scream that I've been over the options and back over them a million times, but it's not something we feel comfortable discussing with her. My defenses were low and I explained more than I wanted to, when I really just wanted to go cry in a corner.

Why are you so expensive???

I really hope we can get this prescription problem sorted out. I need enough Menopur to stimulate a large horse and it will be insanely expensive out of pocket.

Fragile X Premutation

You might recall from my last infertility post that the genetic counselor decided to test me for Fragile X as a last attempt to explain my ovarian failure. Since my family has no history of Fragile X, any type of Mental Retardation or even Autism, I didn't think much about it. As it turns out, this was a bad move on my part.

As I hung up from a very successful conference call for work, my cell rang again in my hand. I didn't recognize the number, but since I'd been talking to three different states, I assumed it was work related and picked up without much thought.  Instead of my web developer, it was the genetic counselor from Kaiser. In a voice too cheerful for the subject matter, she gently explained that my results came back positive for a Fragile X premutation. Normal people have between 0 and 54 trinucleotide repeats in their FMR1 gene on their X chromosomes, although some argue that there's another intermediate category between 45-54 repeats. Both of these repeat categories are stable, if mom or dad has 30 repeats, their kids will get 30 repeats and the allele will remain stable.  There might be the tiniest bit of growth in the 45-54 region, if mom has 47 her child might have 50, but the again it's fairly stable.

People with Fragile X have over 200 CCG repeats, leaving a murky grey area in between for carriers with a premutation, 55-200. My test came back with 99 CGG trinucleotide repeats, putting me squarely into the group of carriers. The problem with this category is that the larger the repeat size, the more unstable it becomes. Although my other X chromosome is normal, a repeat of 99 on my bad X has, on the lower end, an 80% chance of expanding to a full mutation if passed on. This means that if my child received my faulty X, they would likely have full blown Fragile X. This is absolutely devastating news.

In addition to the crushing fear that my child might inherit severe mental retardation, we finally have an explanation for my failing ovaries. About 20% of women with a Fragile X premutation have premature ovarian failure, FXPOF or FXPOI. Women with more than 80 repeats are supposed to be at a lower risk for POF than those with smaller repeat sizes, but apparently my body didn't get the memo. This means that all the lovely symptoms I've been complaining about for years, hello hot flashes, night sweats, and weight gain, were because my ovaries were shutting down and my hormones were tanking as they tend to do when you go through menopause. Apparently my ovaries may continue to shut off, or spaztically turn back on every so often if they feel like it and only 5-10% of women with FXPOF can have children. Thus far I still appear to be making eggs every month so we're crossing our fingers that all hope is not lost yet. As you might be able to tell, I don't feel particularly hopeful.

In addition, I have to watch out for FXTAS.  Although it tends to be a bigger problem for men with only one X chromosome, rather than women who have some protection from their good chromosome, FXTAS causes ataxia, tremors, memory loss, dementia, a loss of feeling and weakness in the lower legs, and even mental and behavioral changes.  Basically, another horrific possibility, even if it usually effects men.

If you've been following along thus far, let's take a look at our odds.

Me:
0.44% or 1 in 225 women have a Fragile X Premutation
20% of women with a premutation have POF, or 20% of 0.44% which is 0.088%

E:
0.033% - 0.05% of men have y chromosome infertility
10% of Y chromosome infertility involves a deletion in the b region, so 0.0033% -  0.005%

Can you imagine the odds of both of us having such catastrophic genetic infertility?

Seriously, what in the ever loving fuck universe.

What. The. Fuck.