The First (Injection) is the (Hardest), Baby I Know

After the disaster of an afternoon, I was hoping to relax, take my amazingly donated Menopur and lay low. I laid everything out as instructed and began mixing all my vials.

One dose of Menopur

Since my ovaries are unlikely to respond well to stimulation, I'm taking 4 vials of menopur in 1cc of sodium chloride. The Menopur comes with this awesome little Q cap that allows you to draw up the liquid, inject it into the first vial of powder, mix it up, draw up the liquid, inject it into the next vial and so on and so forth. I'm taking 4 vials, so I do that 4 times.

This process I'm very comfortable with.  I've worked in several different labs and I mixed everything up methodically and with little thought. Sterilize the tops, mix the liquid, prep the syringe and pop on the needle. It was a perfect syringe, no bubbles, precisely measured and ready to go. Except this time, I wouldn't be injecting a mouse or one of my cats, I'd be injecting my own pinched belly.

I took a breath, moved the needle close to my sterilized skin, counted 1, 2, 3 and Lost. My. Shit.  I deal with our infertility by intellectualizing it, researching, and telling myself we'll be a positive statistic. After today, all my emotions were lurking just below the surface and I couldn't distance myself. I looked at that needle and the full weight of everything we're going through, the very likely possibility of having to terminate the baby conceived with some other woman's generously donated Menopur, hit me smack in the face. I completely broke down, started sobbing, and had to put the cap back on my injection.

Teensy needle, why do you (emotionally) hurt so much?

I texted E, who was wonderfully sweet and supportive, but who wouldn't be home from work until after 11. I paced, I cried, I tried to settle myself down with some music, but nothing was working. The first IUI appointment, the pharmacy problems and my mother's questioning weakened my barriers enough for one, tiny little needle to break down my carefully built walls like a bulldozer.  It was bad.

I'd say it took me about an hour to stop crying, pull my shit together and just give myself the shot. Four sequences of sterilizing, uncapping, pinching, recapping, crying, and attempting to process what this little shot symbolizes before I could take control and do it.

Realistically, these Sub Q injections aren't bad. The needle is so tiny and sharp that you barely feel it going in. Actually injecting the liquid is fairly uncomfortable, you have to go really, really, really slowly, and it dose burn a little as well. Overall it was slightly physically uncomfortable but not horrible, and probably wouldn't be too bad emotionally if you aren't brutally shoving your feelings down in an attempt to cope. The spot is still sore a hour later, so I wouldn't go to the gym right after, but it's nothing terrible.

Advice for those just starting out: The shot doesn't hurt badly, but if you're not emotionally coping with your infertility, have someone help you with the first injection.

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.

Irresponsible Parenting and Bitterness

So miss Milou and I were wrapping up her agility class at the park when a little boy wanders up. He's maybe 2-3 years old, still in diapers, Hispanic, no phone number on any of his clothing tags, and is too scared to respond to English or Spanish. We figure he must have wandered over from one of the baseball diamonds near by so the a few members of the agility class fan out and start asking each group if they're missing a child. There's two baseball diamonds, a soccer field, several picnic areas, large open space. About 20 minutes passes, the little boy still won't say anything and none of the groups on our side of the very large park are claiming him. We call the police, report the found child, and keep waiting.

After about 35 minutes, three older children come walking up and call "Andrew!". He is apparently their brother but no one noticed him missing until now. Mom and dad casually stroll up a few minutes later, perfectly calm and say "oh there he is". My classmates and I have been pretty upset that no one has come looking for him until now, and politely speak with the parents.  

Us: Um your child has been with us for over half an hour. We called the police. How did you not notice him missing?? 
Mom: "oh, they were playing and he must have wandered off" She was completely, genuinely unconcerned.
Us: .....
Us: The police are going to be here in a few minutes. We'll send them to you when they get here.
Me: You should put your phone number on his tags so we have some way to contact you...
Mom: Yeah, I really should have those tags in his clothes.


WHAT THE FUCK PEOPLE. You lose your toddler still in diapers and don't notice for half and hour??? They weren't even looking for him. He wandered over to the compete opposite side of the park, almost half a mile and no one noticed? How the fuck are you not losing your shit?? What the fuck is wrong with these people? Every single member of our Agility class would have freaked out had their dog been missing for 2 minutes, let alone a small child.

We called the police back just as they were pulling up so we directed them over to the parents. I try not to judge parents because shit happens and you never know the whole story. Parenting is hard, children can slip away quickly and you can't keep your eyes on them every second. But I can't imagine losing my baby still in diapers, not noticing they were missing, and not caring or being concerned.  This park has two large and busy parking lots and borders a busy street. There is an archery range with sharp arrows and dog walkers with loose dogs. Someone could have picked him up and been miles and miles away in the time it took mom to notice the boy was missing.

This family had at least 4 children that we saw and apparently all those eyes couldn't keep an eye on one, slow moving toddler. Situations like this make me really angry at the universe.  E and I can't have a healthy baby but this family can have at least 4 children that they can't manage to keep track of?

(Where's myyyyyy baby??)

I'm having a major bitter moment over here. I'm really glad the little boy was safe and I hope the police told them to keep a better eye on their child.

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.

Hasa Diga Eebowai

This week, E and I got some pretty awful infertility news. I know that seems ridiculous, since we've already received just about all the awful infertility news possible, but apparently the universe was not done with us. I don't quite feel ready to talk about it yet so I'm going to talk about The Book of Mormon instead.

As you know, E and I were unsuccessful at getting tickets for our anniversary. Instead, we picked the next day E had off, which happened to be last Thursday, and bought some killer seats down in the Orchestra section. The Book of Mormon has some complex, fast paced songs so if you're going I highly recommend seats pretty close to the stage. You can catch the gist from anywhere in the theater but if you want to hear every raunchy, dirty, word you need to be up close.

Which brings us to one of the primary points, the absolute filthiness of this musical. Make no mistake, The Book of Mormon was absolutely hilarious but it is definitely way out there. You should prepare yourself in advance so you're not shocked when they start dropping C bombs left and right.  Don't let the foul language and taboo themes keep you away though,  it's absolutely worth seeing if you can get seats before it's gone.

The basic plot revolves around two young Mormon men, Elder Price and Elder Cunningham. Although they couldn't be more different, they get paired together for their 2 year Mormon mission in sunny Uganda. Their job is to go out there and convert as many Ugandans as possible, because God loves Mormons and he wants some more. The only problem with their plan is that the Ugandan's are a little too busy starving, dying from AIDS and being tortured by the warlord General Butt Fucking Naked to be interested in converting. The situation is further complicated by Elder Price's waning faith, it's hard to blame him when people are being shot in the face, and Elder Cunningham's compulsive lying. These two will be the most colorful Mormon's you've ever seen, and although the writer's take liberties with just about everything, your sides will hurt from laughing when the curtain falls.

 If you're in the Los Angeles area, E and I would highly recommend you see it at the Pantages. The theater itself is gorgeous, the cast was spot on, and there isn't a bad seat in the house. Just don't go with anyone who might be offended by comedic foul language, racism, sexism, or just about any other awful and taboo concept you can think of.

In the meantime, E and I will try to stop saying Hasa Diga Eebowai and remember that tomorrow is a latter day. It can't get much worse, so things can only look up from here.