FRO

It is terrible, but I always have a mental "FRO" list. FRO, you ask? "F*ck Right Off". It's the list for things or people or processes that really just need to f*ck right off. Take, for example, CVS/Caremark, which STILL has not processed the prior authorization sent in on Tuesday. CVS/Caremark can f*ck right off. Sideways. 

You know what? Add to the FRO: repeat pregnancy loss. 

I am pregnant. Today, I am pregnant. Two lines and my hcg level say so.

I had to tell the genetic counselor I met yesterday to discuss BRCA1 testing for me. She wanted me in for a mammogram, and I told her I was pretty sure I was about 2 seconds pregnant. She told me congratulations. I felt so sad hearing that, because I couldn't accept it. I told her to wait for a few months before the congrats, because after three miscarriages, no one should celebrate this until we're confident it will last. 

Fuck miscarriage. Fuck it for taking away my chance to be happy early in this pregnancy. Fuck it for making a BFP a sad event, not a happy one. Fuck it for making me question my eggs, which means I won't be enjoying anything until after the NIPT is done and I know the baby is healthy. Fuck it.

Fuck it for making me wonder if the beta value the nurse told me (249.9) really belongs to someone else, because it seems too good to be true, and the super sweet lab tech mentioned that there were several other positives today.  249 is such a great number for how far along I am, I just can't believe it's mine, especially when the line on the FRER this morning is so damn faint.  

Fuck it, because when I saw another CCRM patient come in today, bringing food and a present for the doctor and nurses, and hugging them and crying because she was one of the other newly pregnant patients, all I could think was "She doesn't know she shouldn't be so happy yet. She doesn't know how risky hope and excitement are. I hope she never finds out."

No one should ever, ever have to feel like this about a wanted BFP. I am so happy for women like the lady at my office who don't feel this way. I wish I could emulate them. 

Vanity (un)Fair

I like to pretend that I'm not a terribly vain person. I care about my body's physical ability, and I engage in enough personal grooming to fit within corporate america, but I don't think of myself as fixated on my appearance. While I dress appropriately for work, I wear socks with sandals on the weekend, for god's sake! How vain could I be? And if my hair isn't perfect, and I'm wearing clothes that are out of style by a few years, I've always been belligerently ok with that, because I'm still clean and presentable, and I don't care what anyone thinks beyond that.

But, seriously, the TWW-acne is killing me. On Friday, I stopped counting at 3 dozen whiteheads, just on my neck, chest and shoulders. Three dozen. They keep popping up, more and more. This happened last month, as soon as I started the crinone, and again this month with the prometrium. I don't think progesterone is supposed to cause acne, but this isn't without precedent for me. I was on Depo-Provera for many years when I was younger. From college through grad school, and then into my first several years of working. Depo is progesterone based birth control. For all the years I was on it, about once a quarter I'd get acne just like this. Dozens of little whiteheads. The last time this happened to me was while on Depo, and it never happened again during my 6 years with Mirena or my year on Nuvaring.

I am so uncomfortable and self-conscious. It's summer, and the hottest one we've had. The one part of my body I like are my arms/shoulders. The bike riding I do has made me feel good about them, and I have a ton of sleeveless summer clothes that I love. Thanks to the revenge of the progesterone, I hate wearing them. I hate the thought of anyone seeing how bad my skin is. My belligerent uncaring is gone by the wayside and I feel ashamed. It'll all be worth it for a lasting pregnancy, but it sure isn't easy now. As always, nothing about recurrent miscarriage or infertility is fair.

Overprepared

I realized this weekend that if this cycle wasn't successful, I'm likely to start my period on Thursday or Friday. Overall, that's fine, however my delightful insurance requires me to get pre-authorization and use their mail order pharmacy. That means that if I need to start taking a different medication on CD3, which will be Sunday, I need to get it ordered and paid for now, before I even know if this cycle will work or not. Thus, if my cycle is successful, my insurance and I will have paid for medications I don't need - because they're unwilling to allow me to use the local pharmacies. Yet another irrational business decision. Perhaps they hope that I would not think through this, and would have to pay out of pocket locally, as happened with my trigger shot?

All of that means I reached out to my RE's office today to ask about any changes to medications for the next cycle. We'll see if there are any ideas on my progesterone level.

In other news, I understand that hcg is necessary to trigger the maturation and ovulation of eggs during ovarian stimulation. That said, it is such a mind game to have all the symptoms of pregnancy, but no ability to discern what might be from an actual growing embryo versus what's from the shot and medication. I am relatively calm and collected waiting for Friday, but the trigger-shot symptoms are just the pits.

Out of My Hands and Into My . . . .

Here I sit in the dreaded 'two week wait' - the period between ovulation and when a pregnancy can be detected. I think the TWW is dreaded by most women because it's a time when nearly everything is out of your hands. The only thing you can do is wait and see what happens. (Actually, in my case that's not true. Everything may be out of my hands, but thanks to progesterone and estrogen supplementation, that's just because everything is in my vagina instead!)

My coping method for stress is to do something. Anything. So the TWW is the antithesis of how I productively deal with stress. Thus, I've used the time to do a bit of research on how this cycle has gone. And the result is that what I've found doesn't bode well for the success of my cycle.

Study after study, in the context of IVF, have found that having a progesterone level on hcg day that's over 1.5 ng/ml is correlated with extremely low clinical pregnancy rates. The hypothesis appears to be that the cause is an endometrial lining that is no longer conducive to implantation.

Hmmm. . .let's think back to my cycle. Lining, per ultrasound on injection day? Cystic patch. Progesterone level? 2.59. Well, crap.

I couldn't find any research on this topic specific to IUI/TI, so I'll hope it's less applicable here, but I know better than to expect a miracle. Time to prepare for the next cycle by asking my doctor how we manage this.

Trigger Warning

Yesterday afternoon, at 3:45, I finally got the call from my RE's office. They wanted me to trigger. But the trigger shot that I had gotten via my insurance? The one that had taken multiple phone calls, extreme stress, and required DH to stay home to sign for? Did they want me to use that? Nope. Because of my bloodwork results, they wanted me to take a different product.

The new trigger shot was a brand called Pregnyl. Since this is a specialty mediation, there is only one pharmacy in the Twin Cities that has it in stock. So I drove there. At rush hour. And because this isn't my insurance's specialty pharmacy, I had to pay out of pocket, the full cost, with no hope of reimbursement. What was the cost, you ask? Well, if I'd ordered it online from a different specialty pharmacy, the cost would have been between $70 and $84. The cost listed on my doctor's office paperwork was under $100. If I'd ordered it via my own insurance's specialty pharmacy, the cost after insurance would have been $34 and untold aggravation. Instead of that, I paid $330. For the bloody generic, because they were out of the brand name.

$330 for the generic.

I am Not. Happy. My blood work was largely unchanged from yesterday. If they'd told me they wanted to change the trigger yesterday, I could have jumped through the insurance hoops, or rush ordered from the other online specialty pharmacy. But they didn't. So I paid nearly four times what I should have.

Adding to my annoyance is the fact that the 'Estimate of Charges' for this procedure provided by CCRM is substantially inaccurate. They estimated only one set of blood draws. But that's patently wrong, because they draw blood at both baseline and at monitoring. That's a minimum of two draws. They also draw progesterone, LH, and estrogen, but the estimate only includes the first two. Their estimate includes a blood draw fee of $20, but they've charged me $25 each time instead. At $115 per test, plus the blood draw fee, it adds up fast.

In my case, I wound up with an extra monitoring appointment and an extra blood draw. I'm more than happy to pay for more monitoring to get the cycle right. I'm not happy that their original estimate left off testing that they always perform. That's sloppy and misleading at best.

So what's my overall out of pocket for procedure and medication? Including the trigger shot I didn't use, $2,754.

It Couldn't Last

So far, my response to this cycle has been mostly good news. Estrogen has risen, multiple follicles have grown. I haven't needed massive increases in FSH to accomplish this, although I've stimmed longer than I'd have hoped. My lining was even improving.

I guess it was too good to last. My follicles are still looking good, although the largest ones remain on the possibly blocked left side. That said, I have an 18 on my "good" side, so that gives me a shot.

My lining, however, is now 7.3mm with a cystic area. That can't bode well. I'm waiting for the next steps call, but I'm not optimistic.

Anyhow, for those who are interested, here's the summary of my monitoring appointments.

CD2: Baseline
Antral Follicle Count (AFC):
Right = 6
Left = 3 (and a collapsed corpus luteum cyst)

CD7, after 4 nights of Gonal F
Right = 11, 9, 8.5
Left = 12.5, 8, 8
LH = 8.24 miu
P4 = 2.68
E2 = 803

CD10, after 7 nights of Gonal F 150 iU
Right = 19, 13.6, 7
Left = 16.5, 15, 10, 8
LH = 1.03 miu
P4 = 1.66
E2 = 1294

CD11, after 8 nights of Gonal F 150 iU
Right = 18, 16, 10, 8
Left = 22, 18, 7, 4
LH =  0.76 miu
P4 = 2.59
E2 = 1690

That's Me!

Tomorrow will be my next monitoring appointment. I'm worried. Yesterday I felt like something was going on in both ovaries. Now everything just feels normal. There are no twinges or pains. I'm worried that somehow a single dominant follicle took over, on the left side that might be blocked, and there'll be nothing on the right side that can be fertilized. I'm worried my lining has tanked for some reason. I'm worried that there's no possible way I can have two good appointments in a row. I'm worried there's no chance of this working. Blah.

Also, after 14 days of crinone, followed by seven days of vaginal estrace, my lady bits are feeling raw. I'm uncomfortable, bordering on hurting. I'm not entirely sure how I'm supposed to make sex happen with this rawness getting worse, but I guess that's just how this goes.

In slightly cooler news, I was able to get the full report on my karyotype from the lab. It actually includes pictures of my chromosomes, shown below. You can see that 9 has one inversion. Pretty cool, if you ask me.

We're still waiting on DH's lab work. Although the turnaround time is 10 business days for karyotyping, LabCorp says that "due to the holiday on 4th, it hasn't been 10 days." Um, DH had blood drawn on June 23. If you start counting business days on June 24, and you exclude July 4, July 8 was 10 days. Today is the 13th. I'm seriously angry about this, and somewhat suspicious they lost his results. Why is no one competent?

What a Difference Drugs Make!

The last few days have been interesting. I've had a quasi-vacation to Colorado to cheer my husband on in a bike race. While there, my RE called to say that my inversion isn't likely to cause any problems, and we should proceed with the injections and pills.

So we did.

Thursday was CD3, and the first day of Gonal F and estrace. The estrace is twice a day, the Gonal F is 150iU. I've read people saying that the shots aren't painful, and I agree. It really isn't. The only time that was unpleasant was when I had to give myself an injection in the back of my Dad's minivan as we drove back to our rental condo after DH finished his event. A bouncing van, plus trying to be discrete since my step mother's sister and her husband were also there, does not lead to a comfortable shot!

Anyhow, today was my first monitoring appointment. Overall, it went well.

Follicle sizes were as follows:
Left: 12, 9, 8
Right: 11, 8.5, 8

Lining was 6.9 mm with triple stripe pattern! That's a win, since my lining is the area we know is problematic. The nurse described it as "beautiful" this time, which is a first for me.

E2 is 803, P4 is 2.7, and LH is 8.2. I'm a bit worried about how high P4 and LH are, since my RE wants me to continue with shots for another three days and return for a new ultrasound on Thursday. Cross your fingers for me that I don't ovulate before then?

Over There

Yesterday I had my baseline ultrasound.

Let's start with the good news: my blood flow is normal!! That means there aren't bloodflow issues to explain my thin lining. One tiny relief.

In other news, my antral follicle count today was 9. That's not great, but given my low AMH, it isn't as bad as I feared. That also reflects an echogenic spot on my left ovary. Right ovary had 6 follicles, left had 3. It took a while to find my left ovary, and the nurse's words were, "Oh! it's way over there!" How is it that my anatomy is so unexpected?

Now I wait to hear if we get to proceed or not. Dr B, here in MN, is going to confer with other doctors in the group out in CO and call me with an opinion on what comes next. That's because of my karyotype results. I really appreciate that my clinic takes the approach of consulting with one and other. From an adult learning perspective, that's how experts build more expertise, so it's good to know it's happening.

Foregone conclusion: I'm Not Normal

In reading through this, you might be getting a picture that things aren't normal for me.

I've had three miscarriages: not normal.
I have an AMH of .406 at age 36: not normal.
My SIS and HSG results showed something really off in my uterus: not normal.
My uterine lining was <5 mm the day before ovulation: not normal.

In light of this, the results of my karyotyping, which arrived yesterday, should come as no surprise: not normal.

Specifically, I have a balanced pericentric inversion of chromosome 9. The break points are at p11q13. Apparently this is just about the most common chromosomal error in the general population. Oh boy. I guess that means I'm normally abnormal?

What does this mean? Well, going back to biology class, you might recall meosis, the process whereby gametes are created. In my case, during meosis, the chromosome 9 that became mine broke at the centromere, and then again in each arm. Instead of rejoining correctly, it flipped itself. So if " | " is the centromere, the chromosome should have been: A B C D E | F G H. Instead, mine is:  A B C F | E D G H.

On the upside, this is the best of all genetic errors to have. If it was a translocation, we'd only have a 33% shot of a normal or carrier offspring from each oocyte. Pericentric inversions aren't nearly as bad, in fact the majority of people conceive successfully. Alas, they increase the chances of unbalanced rearrangements during meosis, which in turn increase the chances of miscarriage and other problems. Depending on which study you read, the risk of miscarriage increases by anywhere from 1 to 30%. No one bothers with stats on birth defects, but those are higher, too.

So, I wait for my doctor's opinion, but I expect to proceed with injections starting tomorrow. Wish me and my broken genome luck?

First Time for Everything

Due to my short luteal phase, I've been taking crinone this cycle. It can delay your period, so my OB instructed me to take a hpt at 14 dpo, and if negative, stop the crinone. Thus, I tested this weekend.

I know many women who struggle with infertility, and who talk about how much it sucks to see only one pink line, time and time again. Then they talk about how different it is to finally see two lines on a pregnancy test. I love hearing about that.

In my case, I'm a little bit backward. In the last eight months, I've never gotten a pregnancy test with only one line. I've peed on several dozen tests, mostly Wondfos, and each time I've seen two lines. Sometimes the lines have been faint. Sometimes, they've been present, even when I didn't want them, like in the weeks after my first loss and the d&c that followed. But wanted or not, I've always seen two lines on the test. Until this weekend. This weekend there was only one line, and it was weird. I was 100% sure I wasn't pregnant, since I had none of the symptoms from the last three pregnancies, but it was still weird only seeing one line.

AF arrived Monday, right on time. TodayI go in for my baseline ultrasound, doppler to check for bloodflow, and initial bloodwork. If all goes well, I start medications in another day. I'm praying that the next time I test, I once again see two lines.

I'll Take Medical Malpractice for $500, Alex!

I'm getting frustrated with my clinic. This is a year-old satellite office of one of the best fertility centers in the US. CCRM has phenomenal success rates, and they deal with some of the most challenging cases. At least, that's true of the Colorado location. 

I am using the Minnesota location, which is too new to have published success rates. So far, I've been impressed by the people, but increasingly horrified by the practices. What do I mean by that? Well, let's talk about went wrong last week alone:

• The wrong medications were ordered for me. I should be taking Follistim, progesterone and estrogen. What was actually ordered? Those things, plus hcg, depot lupron, cetrotide, and menopur. Those are IVF drugs. I am not yet to the point of IVF.
• No surprise here, when the wrong medications were ordered, the wrong treatment code was used with them. This caused my insurance to reject the request. I'm now fighting to have my actual drugs be covered, and there's a good chance I won't win the fight before I have to order them. 
• The big one. DH went in for a SA. He checked in, presented his driver's license, and had his identity confirmed. Good, right? Then the nurse asked him to look at the paper and confirm his wife's name. The woman on the paperwork? Definitely NOT ME. First name was completely different. Think, "Jane" was the name on the paper, while my name is "Sandra" (totally not the real names). Last name shared the first three letters, and then was completely different.

Makes me wonder: were the medications ordered for me really Jane's? Did she get my meds?

Now, look, maybe this will work out well for Jane. Maybe she'll get pregnant if she uses DH's sperm. Maybe I'll get pregnant if I go straight to IVF. But, hell, these kinds of mistakes, from a clinic that's supposed to be one of the best, they don't inspire confidence. They make me wonder if I should go out of state if we need IVF. They make me wonder if I should go somewhere else in-state now. 

To paint a complete picture, let me also share the positive experiences I've had: CCRM Minneapolis is responsive to my inquires. Dr. B, the sole RE there, clearly uses the most recent, evidence-based medicine in making decisions. She also seems to be interested in a challenge, which I appreciate, seeing as how I AM a challenge. Everyone is unfaillingly pleasant to work with. Unlike my insurance company, I never feel that there's a lack of competence - just a massive lack of communication and fact checking.