Taking The Plunge

I met with Dr. K this morning and have a really long chat about IUI, IVF and PGD. Considering how much we're spending on IUI, she strongly recommends we move on to IVF and shoot for another awesome cycle like last month. Although I was hoping for some way to get a guaranteed or refund protected cycle, USC doesn't participate in ARC anymore and they have no cost sharing or package deal. I even asked the billing department if I could make my own package deal and pay up front, but they said no. Legally, they can't accept money for services they haven't rendered yet, and if I get pregnant on the first try they would have to give me the money back. Boo. With my 20% Kaiser discount, one IVF cycle would be $10,734 with an estimated $5,000 for meds for a total cycle cost of $16,000. All their cycles using donor sperm use ICSI so that's included, as is embryo cryopreservation, storage for 1 year, and 1 fresh or frozen transfer.

On the genetics front, my RE was totally prepared. She already submitted the request for my PGD approval through Kaiser. For once, there are no hoops to jump through, they have a billing code in place for it, and it covers single gene PGD for Fragile X. It should be a comparatively small amount to add chromosome testing as well, which Dr. K said would be worth it since we're already spending so much. She also has two calls and emails into her preferred genetics company and they said they might not even need a probe to look for Fragile X anymore. I'm skeptical but we'll see what they say. I'm up for whatever gets us the best results.

On the health front, my baseline ultrasound was disappointing. I still have a lot of corpus luteum cysts that haven't resolved and it was pretty tough to see the antral follies. It's normal to have corpus luteum cysts after taking a lot of fertility drugs, they're basically the left over "houses" that the eggs grew inside. I'm going to be on birth control for 14 days and will then have another ultrasound to check and make sure the cysts have resolved. If they have, we'll go ahead with the IVF, if they haven't, I have to take the cycle off and lose a month.

E is at work so we haven't had a chance to chat about it much. I know it's a high number but it's lower than I was expecting after hearing about 20-30k+ cycles. Plus, if we get healthy embryos that test negative for Fragile X and Chromosome problems, we should have a 65% success rate of them sticking. I just hope I get another good cycle, I need those 7 eggs to try for 3 healthy embryos.

Blah

Today was much more of a blah day then yesterday.

I woke up to what definitely looked like a light period, complete with miserable cramps and since E and I are dog/house sitting, I had no pads and there is apparently not one single Advil or Tylenol in the house. Today makes day 11 of this month's "period," which sucks no matter how you look at it. It started as soon as I stopped the progesterone like it should have, but then I started the birth control on CD 2. I bled through CD 4, spotted through CD 7, and then thought it was done until I stopped the birth control. I was being too optimistic since it started right back up and I've been spotting CD 14 - today, CD 17. I feel like I should be looking this up or asking other people following an IVF-ish protocol if they've experienced the same thing, but biologically it makes sense. Stupid period, why don't you go disappear for 9 months -_-

After determining that I would need to go buy some supplies, I felt rushed through this mornings shot. I was running late to meet up with our old vet to pick up our animal's charts and had tried to stick myself three times before realizing that the needle must be a dud. It acted just fine when I primed the injection, but must have been dull or slightly bent since it absolutely refused to go in. Ouch. I'm now one needle short, since I had an exact amount, and am going to have to buy more next time I'm at Kaiser.

Won't you throw my ball for me? See how cute I am in this tiny bed?

Revisiting the topic of side effects, I can't tell if I didn't get enough sleep or if the Menopur is making me crazy tired. I feel drowsy, like I can't fully wake up, and I can't seem to shake it off. I tried napping, was unsuccessful, and have felt "ugh" and "blah" all day. I would try to put it more eloquently, but I can't summon the energy required to do so. Blah it is. Poor Milou seems to be feeding off my energy,  she's been laying around looking at me all mopey and sad, even though she had her favorite class, Agility, today.  Now I just feel guilty that I'm bumming out my puppy, completing the circle of "blah".

Blah puppy. Sorry Milou

Update: I just administered my evening injection and was greeted with the unwelcome sight of little round bruises :( I was really lucky with my first cycle and managed to not get a single bruise on my belly. This time I have one on each side to go with the little red pin marks from the blunt needle and my previous injections. I really hope they don't linger, the designated injection area is so small that I'm going to have to inject on top of bruises if they don't fade quickly.   

IUI Take Two, The (Second) First Injection

This mornings injection, the first one of our second cycle, went pretty well. Mixing everything up was second nature at this point, and it was nice to only have to mix 4 vials at once. E is off work today, his first off day in forever, so he was able to keep me company while I did it. It was a really wonderful change.

The injection itself wasn't too bad, but I did feel a little out of practice. I felt that edgy sense of panic rise up for a second right before I stuck the needle in, but it was gone as quickly as it appeared. I need to try and remember how I sat last time for the most comfortable injection, the needle was a little uncomfortable in my skin and I couldn't tell if I was sitting wrong or just needed to desensitize myself a bit. It burned going in as usual, but like before it's nothing unbearable if I go slowly. I'll probably try a different position for my injection tonight to see if it helps.

4 Days of Menopur, so many vials!

To try and limit skin irritation, I'm going to trade off sides in the morning and evenings. This morning I injected on the right side, so I'll do tonight's injection on the left. Last cycle I did one side per day to give the skin time to heal, but that won't be possible with two injections daily instead of one.

I'm also unnecessarily concerned that I'll forget to do one of the injections. Last cycle I was so strict and focused it felt like tunnel vision. I'm trying to be more relaxed about this one. I'm "cheating" on the acupuncture diet, although I'm still faithfully taking my supplements and drinking my tea, and I'm trying not to stress about things. Tomorrow I have acupuncture and I go in for my E2 ultrasound and labs on Monday morning.

Birth Control Done!

Finally my round of birth control is done! I noticed a bit of cramping each day while on the pills, and as soon as I stopped them I started spotting. I was expecting it, I started on CD 2 just as my period was beginning, so I wasn't too surprised and I'm considering this the new starting line. Tomorrow is my 3rd day off birth control so I start my twice daily Menopur injections on Thursday. Menopur here I come!

These first 5 days of injections will determine how many eggs are recruited. We only have one shot at recruitment so these days will be the deciding factor on whether we do IUI or IVF. If we get lots and lots of eggs, we'll sign the USC Clinic paperwork with ninja speed, complete the cycle with them, and harvest those bad boys. I don't think we'd get more than 6, since they only saw about 6 antral follicles, but I would be ecstatic if we could get 6 embryos. Unfortunately, I think that's a little overly optimistic. Still, positive thoughts!

If we do harvest eggs, the next step would be PGD. This is where things get a bit complicated. There aren't many genetics labs that work with anonymous donor couples because we have no access to lab work. I found one lab, RGI, based on recommendations from other couples in a similar situation, and they said they could build us a probe with genetic profiles and blood from me, my sister and my mother, and two IUI samples from our donor. It would be tricky but it's not impossible, and I expect the biggest issue would come from Kaiser. My RE personally confirmed that Kaiser would cover PGD for me and E, but I'm sure there will probably be some sort of extra charge for semen instead of blood. I can't imagine Kaiser would cover that. This also means we wouldn't be able to change our donor, we're pretty committed to the one we've chosen, but I like the idea of being able to change our minds if we need to. What if his chemistry doesn't mesh with mine? What if we have no luck with this one? What if a better come becomes available?

If throwing the max dose of Menopur at my ovaries doesn't yield more than 3 mature follies, it's back to IUI for us. Last cycle we stimmed for 9 days, but since we're suppressing my ovaries first, we're anticipating needing to stim for 11 days before I can trigger and we can do the IUI. Either way, this will be our month!

TWW: Eff You Endometrin

I don't have much to say today expect that I kind of hate Endometrin. If it doesn't stop fucking with me soon, I will... do nothing and continue taking it anyway because it's helping keep my potentially there pregnancy alive. I'm only 6 DPIUI, right in the zone for implantation, and it's way too soon to be having any side effects, but the progesterone gives you all kinds of pregnancy symptoms that makes you feel insane. I'm pretty sure my boobs might just fall off my chest, I'm still crampy, and it's also conspiring with my Menopur to make me feel extra fat. Eff you Endometrin, but please keep supporting my potential, maybe there, pregnancy.

Fatty McFatty

I'm also too afraid (read chicken shit) to pee on a stick and see if the trigger is out of my system yet. It's been about 8 days since I took it, but since it can hang around for something like 13 days, I'm scared of getting my hopes too high. In theory I should be able to see the line getting lighter and lighter until it's gone, and then any line after that should be a real positive. Maybe I'll check and see how light it is on Saturday, 9 DPIUI, and 11 DP Trigger. It should be pretty nonexistent by then.

TWW: (Not) Symptom Spotting

Since I don't want to make myself crazy, I'm trying not to symptom spot up until the test. That's definitely easier said than done though since the Endometrin is giving me some noticeable unpleasant symptoms.

(Source)

• 4 DPIUI - cramping alllll day. This was day 2 of Endometrin so I'm not sure if it's implantation (pleasepleaseplease healthy embryo!) or the fact that I'm putting progesterone up my lady bits. Ugh.

• Super sore boobs - I have large breasts as it is and now they feel so heavy and sore! Every time I take off my bra I kind of want to cry and I thought I might deck E when he accidentally bumped me.

• Bloating - who knows on this one, it's a side effect of everything. The Menopur, the Ovidrel, the Endometrin, too much (healthy) Mexican food etc. I'm used to it at this point but I'd love it if I didn't look like I swallowed a balloon.

• Tiredness - another one that could be attributed to everything. I'm still recovering from a lot of early mornings and late nights for the wedding and I could definitely use a few more Z's. Still, I'm tired each night, want to sleep in every morning, and at my acupuncture appointment, where I usually doze on and off after about 15 minutes, I passed out HARD within the first few minutes and slept like a log for over an hour. My acupuncturist S let me sleep and I was super grateful. 

I have also lost my primary distraction which is going to the gym. S said she doesn't want me burning up my chi doing cardio and weight lifting when when we need all of it to go to my uterus and help implantation. By now, sperm and egg should have made their love connection and a little embryo should be implanting or on it's way to implanting. S said I can go on leisurely 30 minute walks but that's about it until after this little embryo has hopefully made itself cozy and sticky. Once (see the positive thinking? once, not if!) I have a confirmed BFP, I can get back to a more normal life. Let's go little embryo, stick baby, stick!

TWW: IUI Protocol

Now that I'm in the TWW (two week wait), I'm looking for all sorts of ways to distract myself. J and C's wedding was a happy and time consuming distraction but now that it's over, my mind is free to wander. I'm also under strict orders from my acupuncturist to take it easy for the next week, so no gym, no stress, basically no diverting energy from my uterus where there's hopefully a healthy little embryo getting comfortable.

Although I'm a little unsure about the upcoming acupuncture dates since I'm only 4DPIUI, I think this is the jist of my IUI protocol for this cycle. I'm feeling really good about this cycle so I'm telling myself we won't need to do this again until we want another healthy baby, but if we do my RE wants us to go balls to the wall. This cycle I had a bunch of little follies that didn't grow in time to be ovulated with my dominant follicle. If we need to do this again, the RE wants us to do IVF, starting with birth control (to even the starting line for all the follicles) and then 8 vials of Menopur a day to generate as many as possible. Dr. K doesn't think it's worth harvesting less than 3 eggs which I'm mixed about but see the merit in.

Here's the protocol we followed for this cycle, that will hopefully result in a healthy BFP:

CD 1 - Base ultrasound, 300 IU Menopur
CD 2 - 300 IU Menopur
CD 3 - 300 IU Menopur
CD 4 - 300 IU Menopur
CD 5 - E2 Labs & Ultrasound, 2 good follies one ~11mm, one ~8mm, 1 little cyst ~12mm, 4 tiny follies, Estrogen 68, 375 IU Menopur, Acupuncture
CD 6 - 375 IU Menopur
CD 7 - 375 IU Menopur
CD 8 - E2 labs & Ultrasound,1 good follie 15mm, 1 little cyst ~12mm, Estrogen 186, 375 IU Menopur, Acupuncture
CD 9 - E2 labs & Ultrasound, Ovidrel Trigger, 1 good follie 20mm, one small follie 13mm, 1 little cyst ~12mm, Estrogen 286
CD 10 - Positive thoughts
CD 11 - IUI! Go little swimmers, go!
1   DPIUI - Acupuncture
2   DPIUI - Positive thoughts
3   DPIUI - Endometrin twice daily
4   DPIUI - Endometrin twice daily, Acupuncture
5   DPIUI - Endometrin twice daily
6   DPIUI - Endometrin twice daily
7   DPIUI - Endometrin twice daily, Acupuncture
8   DPIUI - Endometrin twice daily
9   DPIUI - Endometrin twice daily
10 DPIUI - Endometrin twice daily
11 DPIUI - Endometrin twice daily
12 DPIUI - Endometrin twice daily
13 DPIUI - Endometrin twice daily, TEST!!

I'm on my second day of Endometrin now and it's an unfortunately messy medication. They come as these little white pills that you insert like a tampon to help support the pregnancy. The downside of course is that pills dissolve, so it looks like I'm stuck wearing a panty liner for (hopefully!) the next 10 weeks. It's a bit of a mood killer, but anything that helps keep a baby safe and healthy, until we can find out of they're healthy around 14-15 weeks, is okay in our book.

Over the next two weeks I also need to decide if I should test at home before my Beta blood test. On one hand, I don't want to see another negative test, but I also feel like I need to go into the blood test with some idea of what to expect. Some people get negative HPTs right up until their blood test but others get positives pretty quickly. I've never had a positive test before so I don't know how my body will react but hopefully I'll know soon.

Black Outs and Trigger Shots

I'm currently sitting in the waiting room of my RE's office. I should be going in for my 4th monitoring ultrasound in a few minutes but the power just went out to the whole block. Living in Southern California, losing power is not exactly a shocker in the summer.  It's ridiculously hot right now and a city block with at least 6 hospital buildings must draw an insane amount of power.

The back up generators clicked on almost immediately and now the nurses are trying to get the stubborn computers back up. It sounds like half the building is without computers which makes patient check in an interesting experience. Three different nurses have now called for the same person who I'm pretty sure is already back in a room. 

Lucky for me, I was able to get my blood drawn before the power went out. My right arm which I use for blood draws 99% of the time is a little battered and bruised so I asked the tech to use my left with its more stubborn veins. I'm starting to make friends with the tech since I'm there basically every day, and I was super impressed when he got it in one go.  The vein on that side is really deep and hard to find but he only left a tiny bruise. 

Veeeeeeiiiiinnnnnssss

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Damn, I had typed up a whole post but it didn't save when I put my phone down for my exam. The appointment this morning went well, but it was conducted entirely in the dark.  The nurse led me down the dark hallway and into the exam room, lit only by the screen on the ultrasound machine. It actually felt a lot like my acupuncture appointments, minus the candles and soft music and I was afraid I might fall asleep since it was still so early.

Everything was a little awkward since the table was electric and the back up generators didn't provide power to lift it up, but we made it work. The "group of follicles" on my right has been reclassified as a cyst (as I had initially thought) but it's very small and isn't a big concern. The mature follie on the left is a perfect 20mm and has several too small 9-10 follies behind it. There's also a 13mm follie on the right, but it's pretty small too. Dr. K said not to discount it entirely, so we're calling my total loot a follicle and a half. My estrogen supports that at around 280 so I was given the all clear to trigger tonight!  I'm nervous and excited all rolled in one, I need that egg to have my healthy X chromosome.

In the midst of all this infertility chaos, my best friend J is marrying his wonderful fiancee, C. I'm the Best Woman in their wedding and have felt awful about my infertility crap interfering with their wedding plans. Luckily, our IUI will be done before the wedding but it's still on the morning of the Bachelor/Bachelorette party, and I'm going to have to sneak away after the rehearsal but before the rehearsal dinner for some quick acupuncture. I'm so excited for them to tie the knot and the ceremony should be intimate, personal and beautiful.

And Then There Was One

So today's appointment showed that I'm down to one good follicle. The opaque or weird follicle on my right ovary was actually a collection of small follicles grouped together so they looked like one larger follicle. There are now 3 follicles on the left ovary, but only one is growing and developing while the other two aren't really developing at all.

The big follicle, the one with baby potential, is about 15mm which is a decent size for CD8.  My estrogen was 185pg/mL so it is going up, but still isn't ready to go. I think each mature follicle produces at least 200pg/mL of estrogen so my labs confirm just the one viable follie. I go back in for more labs and another ultrasound tomorrow morning which should give me an idea of when we're doing the actual IUI.  I'm pretty sure Wednesday is now off the table and we're looking at Thursday or Friday.

One thing that's concerning to me - I ovulate by myself every month. That's one egg developing each month without help from fertility drugs. It takes a little bit longer, I don't ovulate till day 16ish, but I do ovulate. Now I'm injecting 6 vials of Menopur, like $300 into my belly every day, and I'm still only developing one egg.

Does this mean I'm technically not responding to the Menopur at all? What does this mean for us if we need to do IVF? If I can only get one egg off of this many hormones, how am I going to get enough for IVF with PGD?

Hopefully we won't need to go there. This cycle is going to work. I'm going to get pregnant with a healthy baby from that lovely little follicle on the left. This is going to work.

E2 Labs and Ultrasound

I had my ultrasound and labs this morning and the results were mixed. The good news is that we saw at least two little follies growing, one about 12mm and the other around 11mm! Two potential chances, I'm over the moon. There was also another follie that looked a little bigger but it wasn't quite right, the opacity was somewhat off or weird, so we're not holding our breath for that one. Two is still awesome even if its not the 4-6 we would have liked.

The not so great news is that my estrogen is still low. It was only 68 on Stim day 5 so I'm upping my dose of Menopur to the even more impressive, dun dun dun! 5 vials per day. We didn't start off on the max dose so we could move up if needed and that's what we're doing. Unfortunately, the initial egg recruitment is already done so we aren't likely to get more follies than those already there. She did see 4 more smaller follies on one side, but it's unlikely they'll grow big enough to ovulate for our IUI. The med increase also means we probably won't have any left over for IVF if this doesn't work. Fingers crossed it works!

5 Vials of Menopur is $287.60 per day. Ouch.

E and I also went ahead and ordered our vial of premium IUI quality sperm! I'm pretty excited to actually have a chance at getting pregnant this month since it will be our first opportunity to really have a shot. We pick up our swimmers on Tuesday in preparation for our IUI on tentatively Wednesday or Thursday if everything goes okay.

The next ultrasound is Monday so I'll have three days of 5 vials per day under my belt by then.  Please send all good vibes, thoughts, energy, etc to my little follies. In the meantime I'm going to acupuncture today and will ask her to do everything she can to get my lining thicker, my estrogen up and my follies healthy. I need those babies to grow!

$2,000 down and 4th Injection Done

Since it's become apparent that the insurance company has no intention of honoring their original medication coverage, I bit the bullet today and paid for my meds out of pocket. It was painful.

My first stop was Kaiser. I got the Menopur there for $57.52 per vial which is an excellent price as far as I can tell. I should have also purchased my Endometrin there, but there was a minor miscommunication with the other pharmacy I was purchasing from. They quoted me a cheaper price than Kaiser, but neglected to mention that my RE had ordered two boxes of Endometrin, not one.

When I checked out, the pharmacist said he'd never rung up a bill so high in the 6 years he'd been working there. He'd never seen anyone pay 100% OOP for fertility drugs, the most he'd encountered was 50% and he was astounded that we had literally no coverage for the meds. He actually wasn't sure the system could ring up a bill that high and it did decline my card the first time I swiped it. The second time it worked, with extra authorization, and I left with my $1725.80 worth of Menopur.

The next stop was Northridge Plaza pharmacy, which had my Orvidel for around $77, which was great, but my Endometrin was over $200 for two boxes. I ended up checking out at around $295 and here my card was declined again. I ended up having to call my credit card and assure them it wasn't fraud before they would allow me to make the purchase. They promised it wouldn't happen again and I let them know I'd be making another $800 purchase in the next few days.

While I was waiting on the phone, a woman came up to purchase her trigger shot. She's doing her IUI on Saturday and was thanking the pharmacist for running her Menopur through her insurance. Apparently her Menopur was only $30 and she was so happy she almost cried. I wished her luck, looked down at my $1725.80 worth of Menopur (I was afraid to leave it in the car) and hoped/wished/crossed everything I had that this cycle yields a healthy baby.

On the way home from Northridge, the wood inset on my driver's door handle literally fell off on my foot. It felt like the universe was just rubbing salt in my wounds. I know my car is over 10 years old but I can't pay for insanely expensive fertility medication and a new car at the same time, so she's just going to need to hold herself together. I super-glued the panel back on with some Gorilla glue and I hope nothing else decides to fall off my car in the meantime.

Finally, today was CD4 and injection number 4. It burned like last night but I didn't have any problems with bubbles so the entire process went a lot faster. My routine takes about 15 minutes, I turn on my music, sterilize everything, mix up the injection, put it away, go pee, sterilize everything again and give myself the injection super, super slowly. I could probably shorten the process but it seems to be working for me and there are a lot of vials to sterilize :/

Tomorrow is my next ultrasound, please let there be lots of little follies growing in there!

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.

Infertility Acupuncture

In addition to our infertility treatment, E and I decided that I should give acupuncture a try. I'd never had acupuncture treatment before, but I had read several good things about it online and many people seem to have excellent success with it improving fertility.

Super Skinny Needles

I'm not sure how much it can help with my FXPOI, but there is scientific proof of increased blood flow to the uterus and ovaries, improved ovarian environment, lower FSH, more balanced hormones etc. I need to get my estradiol and AMH up, my FSH down and help convincing my body it has eggs and isn't 40. So, I put the question to my RE and was pleasantly surprised with her response.

Since many infertility patients are interested in pursuing acupuncture, my RE refers her patients to a wonderful acupuncturist. She is a Certified Nurse Midwife with a degree in nursing, a masters in Acupuncture and Chinese Medicine, and something like 6 years of Acupuncture training. Because she understands fertility from both an Eastern and Western perspective, my RE is okay with me taking herbal supplements throughout my infertility treatment.  If you have any experience with infertility treatment, you will know what a high endorsement that is.

Fertility Points

I started acupuncture once a week and have had three sessions thus far. I generally feel more relaxed after after each session, and I can feel all sorts of tingly things happening during a session but I can't pinpoint what it's doing without testing. The needles are so thin you can barely feel them, and often times it's the tap of her fingers that lets me know she's put a needle in.  The other day she accidentally poked my foot with the plastic packaging the needle comes in and I was struck by how the plastic package hurt way more than the needles.  There are a couple points that twinge or ache a little when she puts the needle in, but the ache means the needle is placed correctly.

I also just finished my first week of herbal supplementation, the acupuncturists prenatals, and the acupuncture diet, and from that, I can Definitely feel the difference. It only took about 24 hours of the powdered herbal tea twice a day for me to be insanely hungry. I used to be able to go all day without eating and not notice it, but the past week I've been ravenous. I wake up hungry, I'm hungry in between being hungry, and I go to bed hungry. Basically, I've felt like shoving food into my face at all times, with both hands, and a side of more food.

As to what I'm allowed to eat, that gets a little tricky. My rules are:

• No cold food, ice, ice water, cold anything 
• No dairy 
• No cheese - this gets it's own category. I loooove cheese :(
• No raw vegetables 
• No white flour, bread, pasta, etc 
• No sugar or artificial sugar 
• No juice 
• No caffeine

This leaves me with whole wheaty options, cooked veggies, lean protein, fresh fruit, beans, and a whole lot of soup. Basically, I've been eating soup, eggs or oatmeal for breakfast, soup for lunch, and some sort of protein, veggie, and brown rice/some carby thing for dinner. Even my corn chex with almond milk are considered cold food, so while I've been pretty limited, I haven't let it stop me from shoveling food in my face.

Breakfast

When I told my acupuncturist about my need to be eating at all times, she was thrilled. Apparently my metabolism has been functionally shut down due to my lack of hormones, and the fact that I'm crazy hungry means it's turning back on. I've also been back at the gym 6 days a week, so it's a double whammy.

In addition to my weekly appointments, I have to go in more frequently around my IUI. We'll probably do the procedure around the middle of May, and I'll have to go in a day or two before, the day of, and the day after. Between the Menopur injections, the trigger shot and the acupuncture needles, I'm essentially a human pincushion.

The only downside to Acupuncture is the cost. Without counting the special appointments around my IUI, acupuncture is essentially like a car payment every month. I'm hoping that it will improve my fertility and our chances of having a healthy baby enough that we won't need to do IVF, which will should save us money in the long run. It should also make me healthier, which is always good, and which will hopefully contribute towards some weight loss, balanced hormones, and a healthy pregnancy.

Rolling the Dice, Fingers Crossed

After much discussion, some tears, and a whole lot of wallowing in self pity, E and I have cleared our heads, discussed our different options and decided to roll the dice. Beginning with my next period, we are going to be attempting IUI.

We went with this incredibly scary decision for a number of reasons.

Success. For starters, this is our best chance. People with Fragile X Premutation infertility don't respond well to the stimulation hormones required for IVF, so I am unlikely to produce many eggs for PGD testing. Most have better luck getting pregnant naturally, or with IUI as long as their ovaries are still functioning. I'm not entirely sure why this is. With the extra methylation of my CGG repeats, it could be that the protein necessary for ovarian stimulation is being used up by extra mRNA :/  My FMR1 gene is still functioning just fine since I don't have Fragile X, I have normal brain develop and am intellectually normal, but there's definitely some deficiency in my ovaries.  I'm hoping that since I'm still ovulating without assistance that my ovaries will oblige me and respond at least decently to the IUI drugs.

Cost. It feels horrible to be basing fertility decisions on money, but there's no way to get around the cost of IVF. Given my likely poor response to stimulation, we'd probably have to do IVF, or at least mini IVF, several times. Although Kaiser will cover PGD, it will still run us 20-30k per cycle.  Mini IVF would be less expensive, but we'd only get 1-2 eggs per attempt and 50% of them would probably be positive for Fragile X. Kaiser will cover unlimited IUI attempts for us, although the national average is about 4 attempts per pregnancy and most people don't try more than 6 times if they're unsuccessful. If IUI produces no results after several attempts, we will still have IVF in our back pocket and USC Fertility will give us a 20% discount because we're Kaiser members.

Information. Even if IUI doesn't work, I'll be taking the drug Menopur which is also used for IVF. Given that it takes awhile to figure out the right combination of hormones to stimulate ovarian production, IUI will give us a lot of information on how my body responds. Although we're only trying to stimulate one or two eggs with IUI, it would be nice to know if my body can be stimulated to make more so we'd have more for PGD.

(source)

On the flip side, we're taking a very big risk with IUI. We have a 50% chance that if it works, our baby would have Fragile X and we would have to terminate. Since we won't be able to do any testing on the embryos beforehand, we'd have to rely on CVS testing at 10-11 weeks. The cells would then have to be cultured, which could take up to two weeks, and then tested which could add another week. We probably wouldn't have an answer until 14 weeks and then we'd either get good news or bad news. Our RE has suggested that we schedule a termination in advance to make sure we wouldn't have to wait even longer in case the news was bad.

The notion of terminating a desperately wanted baby is terrifying. I'm a strong supporter of women's rights and fiercely pro-choice, but I never thought I'd be in a position where I'd have to make this decision. We spent so many years carefully trying to avoid pregnancy, and if we'd been 16 and stupid I think we would have terminated without guilt because it would have been the right decision. At this point in our lives I naively assumed that we'd be taking home any baby we got pregnant with, when the reality is that 50% of the time we won't be.

I'm also not sure how many terminations I could endure. I know other carriers of horrible diseases often undergo several terminations for medical reasons, but if IUI works and we have to terminate the baby, I'm not sure if I could try IUI again. It would still be our best chance for getting pregnant but I just don't know if I could take that chance again. I really hope we won't have to.

Options: IVF with PGD or IUI

People in my situation have two not so fabulous but viable options for having a healthy genetically related baby.

Option A: IVF with PGD, my eggs and donor sperm
Option B: IUI, my eggs and donor sperm

Option A is quite expensive. It would involve doing IVF which would run us about $20-$30k. I am unlikely to respond well to stimulation so we aren't likely to get very many eggs, no matter how many hormones they throw at me. Any eggs we did get would be fertilized with donor sperm and biopsied on day 5 for PGD testing.  Luckily, Kaiser will cover PGD which will save us about $8,000 but it can be hard on the embryos and not all will make it. If we were lucky enough to have healthy embryos, we would do a FET, or frozen embryo transfer and hope that they take. We may potentially need to do IVF several times to get healthy, viable embryos.

Option B is essentially a roll of the dice with 50/50 odds. We would do an insemination with donor sperm and hopefully get pregnant. We would then do CVS testing as soon as possible, probably around 11 weeks, and then wait with everything crossed for the results to come back. If they come back negative, we get to have a healthy baby. If they come back positive, we would need to terminate the pregnancy. Kaiser will cover unlimited IUIs for us, so the bulk of the expense would be donor sperm, about $4,000 for 5 vials, but we would have to endure a 50% chance of terminating a desperately wanted pregnancy at around 14-15 weeks. I don't know how I'm going to cope with that.

(Source)

Our other options for a baby would be using an egg donor and sperm donor, adopting left over embryos, or adopting a baby.

I was originally leaning heavily towards IVF with PGD but IUI may potentially yield better results. People with FXPOI have a better chance of getting pregnant naturally or via IUI since we respond so poorly to fertility drugs. E is on board with either decision, though he would strongly prefer the option that doesn't bankrupt us.

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.

Genetics Expanded

After waiting two months for an appointment with a genetic counselor, E and I finally got in to see one this morning. As expected, they had the results on E's second genetic screening which confirmed his diagnosis of Y chromosome infertility due to an AZFb microdeletion.

They were fascinated with E and the fact that he has any sperm at all. With his genetic profile, he shouldn't be able to produce any sperm but has still had counts as high as 23 million. I would have liked to talk about the particulars more, but ultimately the end result is same, 20 million or 2, his non-motile swimmers are not usable.

The counselor got more info on our families but couldn't really suss out why we both have fertility problems. For a multitude of reasons, both our families are fairly small, and with such a small sample size it's tough to draw good conclusions. We can assume that E's infertility occurred de novo, as a fluke, while mine is still unexplained. They're testing me for fragile x syndrome as a last ditch explanation, since my family consists of all girls for two generations, but it's fairly rare to have a completely silent carrier and I don't have any of the symptoms or markers for the disease aside from my lack of eggies. E was almost late for work so I couldn't get my labs drawn today and will have to go back.

The counselor was really analytical which I appreciate, I approached the situation in the same manner and it made it really easy to connect with him. He understood my desire to have 5 years of egg fertility data to look at before making a decision (sadly impossible) and suggested we come up with a wall sized algorithm to predict all possible choices.  We went over pretty much every situation from E's sperm and my egg to egg and sperm donors. I think we have a somewhat solid plan of action.

**The Plan!**
1. Get my labs done for Fragile X and possibly CMV antibody. CMV antibody status is important for picking a donor. Done!
2. Decide if E is going to have the stimulated semen analysis to confirm for sure that his sperm is unusable.
      a. If E's sperm can't be stimulated, we go with a donor
      b. If E's sperm can be stimulated and is usable, we begin proceedings for IVF with ICSI
          - If E's sperm is usable, we will gender select so as not to pass on the mutation
3. Assuming E's sperm is unusable, we need to pick the donor. I want this to be mostly E's choice. I'm thinking a local sperm bank would be best so we can order the day before it's needed and courier it over.
4. Purchase donor sperm. We need to decide how many vials we want and how many will be stored.
5. Decide whether we're doing a stimulated cycle to see how I respond and try to get a better idea of my egg reserve, or proceed directly to a medicated cycle and IUI
6. Proceed with a medicated IUI cycle
7. Hopefully get pregnant!

While I definitely still have that I might cry sensation at the back of my throat, I am feeling a little better and more prepared. My biggest concerns are that I might be pushing E and not allowing him enough time to grieve. I've been really waring with myself on what we should do next and how we can balance my time crunch with his coping and emotional well being. Today, the genetic counselor said something along the lines of "people take fertility for granted, like gravity. It's just something that's there. But the reality is that for many people it isn't". I talked about how, cost aside, I wished our rolls could be reversed because I don't care about being genetically related to my child but E does/did.

Although we already knew it, the counselor said that not being able to have biological children is horrible and devastating and may always hurt, but that's normal and okay. I think that really helped E to hear this since he's been struggling with the idea that he may never be 100% okay with not having  genetically related children. I think he understands now that it's okay for that to always hurt a little, but it doesn't have to prevent us from having a family and kids that are his in every way that matters. He doesn't have to be thrilled about it, he just has to be at peace with it. I told E the only things I need him to be 100% on are 1. That he still wants children and 2. The donor we pick. As long as he's sure about these two things, I think we'll be okay.

AZFb Microdeletions and a Hysteroscopy

About a week ago E and I went to his follow up urology appointment and received the terrible news that he has a complete AZFb microdeletion. I've started to post a handful of times, but knowing that information hasn't provided us with the answers we need.

The AZF region is located on the long arm of the Y chromosome and there are three segments, the proximal, central and distal, or A, B and C.  Keeping in mind that these microdeletions are extremely rare, deletions in the B region are the most uncommon and have the worst prognosis. After getting my hands on every AZFb paper I could find, the literature concludes that men with complete AZFb deletions do not produce sperm. Men with C region deletions usually have low but usable counts, but B region deletions are an end of the line sentence.  Although E did have several 0 or near 0 semen analyses, he also had a 10 million, 23 million and 2 million, so he is very clearly producing sperm.

(Source)

 
This leaves us with three possibilities:
- The genetic test was wrong, which is unlikely
- All the semen analyses were wrong, which is unlikely since they were done at 3 different labs
- E is an anomaly about whom they will write papers

We just repeated the genetic test but still need to schedule an appointment with the genetic counselor, and have a more detailed semen analysis done at a fertility clinic. We know if we were able to use E's swimmers that we'd have to select for girls, but I'm sure the counselor will want to go over it with us. That and the likelihood of donor sperm, which we are already prepared for.

For me, I had my Hysteroscopy done today, and while it was worse than I was expecting, it wasn't horrible. After the HSG I was picturing the Hysteroscopy as fairly similar, a little catheter threaded up, a numbing injection this time which I was sure would hurt, but nothing too terrible. Instead, there were at least 8 local anesthetic injections into my cervix and let me tell you they HURT, way more than I was expecting. I could feel those suckers all the way down my butt and thighs and they made me shake all over.

Then came the manual dilation of the cervix. Here I mistakenly assumed that since they'd done all those numbing injections, I wouldn't feel anything. Yeah, that was TOTALLY WRONG. I felt every single second of that and it hurt like a bitch. They ended up having to do it multiple times, including one time after they'd tried to put the camera in and it wouldn't fit. Once the camera was actually in, it wasn't horrible and it was pretty cool to see the inside of my uterus on the screen.

During my saline ultrasound, the doctor had seen a little piece of something could be a polyp but she thought it was more likely to be a bit of dislodged lining. It did it fact turn out to be lining, as I had a thick, fluffy lining, despite the progesterone I'd been taking for two weeks to thin it out, so no surgery necessary. Basically everything was normal, normal size, shape, color, it had perfect blood flow, no endometriosis, no polyps, a great lining, basically nothing physical that would prevent an egg from implanting.

At the end of the procedure, the doctor gave us a little print out of shots of my uterus. It felt like a stand in because we don't have a baby for ultrasound pictures, but we took it home for our records. You can't really see anything, just pink walls and fluffy lining.  It's scintilating.

Behold: My Insides

We also had a good chat with our doctor about possibly going with her clinic, since we have to go outside of Kaiser for IVF. I like that she is already familiar with our case and knows how the Kaiser system works, but we'll have to see if it's a good fit once we've met with the genetic counselor.   

HSGs and Saline Ultrasounds

After much anticipation, I finally had the saline ultrasound and HSG this morning! And they weren't too bad.

The saline ultrasound was worse than the HSG, but the AFC/Exam portion of it was worse than the actual saline portion. I am definitely not a fan of the trans-vaginal ultrasounds, they are fast rising to the top of my things that suck list. The Dr. had a tough time counting follies on one side and had to press down on my stomach while pressing up with the wand which was really uncomfortable. She also had a tough time placing the catheter (speculum, dilate the cervix, thread the catheter through and up into the uterus) so it took awhile, but the saline injection itself wasn't too uncomfortable. All in all, I was really glad E was there holding my hand.

My ovaries looked fine, if rather empty, and my uterus looked fine too. The only concern was that she thinks she dislodged a piece of my endometrial lining when she put the catheter in but she was only 90% sure. If the little blob wasn't endometrial lining, it could have been a tiny polyp so she suggested I come back for another test, a Hysteroscopy. It sounds like an awful test (several needles to my uterus??? while I'm awake??) but she said if we're going to do IVF we might as well check everything :(

I'm still not sure how I feel about it, especially since I'm pretty darn sure it was just dislodged lining. She did a detailed ultrasound before inserting the catheter and it wasn't there until after she put the catheter in. If I go through with the test I'm supposed to start taking progesterone tonight which will thin out my lining and stop the 10.5mm follie she saw developing from maturing. I'm a week away from ovulating, from that little follie being ready to go. Logically I know DH and I have no chance of conceiving with 0 motility but actively preventing any chance just feels so wrong.

Since the RE had such a tough time getting the catheter in, she said she was going to leave it in so we could use it for my HSG. Then she accidentally pulled it out at the end, working on autopilot. Since she does these all day and the radiology department has less experience with cervixes, she put in a second one which was just soooo much fun -_- And as I'd read, you definitely leak saline afterwards, I didn't notice until it went down my leg, while I was still laying there and got my socks wet, ugh. I then got to get dressed with the catheter taped to my thigh, go down 4 floors, fill my prescription at the pharmacy, cross the street to another building, go up a floor and stand in the waiting room since I couldn't sit -_-

That was probably my least favorite part of the experience, the radiologist later asked me how I got there since I didn't have a wheelchair and you don't generally walk around with a catheter hanging out of your ladybits. I told her I took tiny steps lol.  After they wouldn't let E in, and the radiology tech tried to direct me into the wrong position, I was really glad that I'd had it put in by the RE, even if I had an uncomfortable walk. All the radiologist had to do was plug into the catheters IV port and inject the dye. Both tubes were nice and open, the dye shot through one side and after I tiled slightly, shot through the other, and not a single cramp from the dye, though it could have been that I was so uncomfy already I didn't notice.

All in all not too bad, a little uncomfortable but not awful by any stretch.