Epinephrine vs. CVS Caremark

For the last ten days, I have been trying to get medications for my next round of treatment from my god-awfully incompetent prescription insurance and their specialty and mail order pharmacies. Let me tell you, in the five months since I last dealt with CVS Caremark, they haven’t improved. Here are some highlights:

My doctor faxed the prescription. Two of the medications need prior authorization, the other two don’t. Thus, two come from CVS Caremark’s specialty pharmacy while the other two come from their mail order pharmacy. The two pharmacies do not talk to each other. Separate on-line systems with separate patient log-in information. Separate call centers. Neither pharmacy has any idea what the other one is doing or knows. Thus, I have to place twice the calls when nothing at all happens with both sets of meds.

Call 1 – CVS Specialty. They confirm that they have the order and even have the prior authorization info from my doctor, but are waiting on insurance information.

Call 2 – CVS Specialty. They inform me that my insurance has denied the claim. This is odd, because I should have just enough coverage left for this order, and then I’ll be out. I ask for more details. The call center agent tells me that my Aetna PPO has denied the claim. I tell him I have never had an Aetna PPO, I have CVS Caremark insurance. He tells me that the claim was submitted to Jennifer Haines’ Aetna PPO plan. I have already told him my name, it is not Jennifer Haines. I reconfirm this with him. Despite this, he proceeds to read off Jennifer’s plan number to me. Awesome. I reiterate, for at least the 5th time, that it isn’t my information. He gets the correct info entered (in theory) and says they’ll submit to my insurance next.

Call 3 – CVS Mail Order. They have my prescriptions, but need information from my doctor. No, wait, they already have the information from my doctor. The prescriptions should ship soon.

Call 4 – CVS Specialty. They inform me that insurance has approved the claim, but I can not yet order the medications because, “they’re not in the system yet.” What the fuck does that mean? The call center rep can’t explain.

Call 5 – CVS Mail Order. Still not in the system. Should be in the system in the next day or two and will ship then. Sorry for the delay, don’t know why it’s happening.

Call 6 – CVS Specialty. Still not in the system. Try calling again tomorrow.

Call 7 – CVS Mail Order. Not in the system. Wait, yes, they are in the system. But, unsure if pharmacy has enough in stock to meet the order. What in the fuck? This is a mail order pharmacy and these are common drugs. Also, I communicate that I’m concerned about the prometrium, because it’s a gel capsule and our temperatures are supposed to hit -22F. I’m worried it will freeze in transit and be destroyed. They transfer me to a pharmacy tech, who can’t tell me anything, but transfers me to a pharmacist. He agrees that it will probably be an issue, but “we can’t do anything about it.” I can either pay for expedited shipping or wait for the meds to arrive and file a claim if they’re ruined. There’s customer service for you.

Call 8 – CVS Specialty. In the system! Ordered! Shipped! Shipped without telling me, and by the way, adult signature is required, so now I have to make last minute arrangements to work from home so I can get the package.

While in the hospital, I lost enough blood that no one could find my blood pressure or pulse on either arm. When the doctor arrived, he gave me epinephrine, which stabilized me so that I could be taken to surgery. Sometime later, when I could talk again, I told my husband that he should have just leaned over and said “CVS Caremark” to me. Hearing their name is enough to get my blood pressure up without any medication at all!

And So It Begins

I headed back to the RE’s office last week. While I have no intention of trying again until March or April, I’ve missed so much time from work that I wanted to get the appointment in before I returned to the office and would have to leave early to take it.

I’ve said it before and will say it again: I have the utmost respect for my RE, her knowledge, and her skill in this field. I feel confident that my treatment plan reflects the most up-to-date science, and that my input is consistently considered. I would highly recommend her to anyone else.

I have less confidence in some of the information that comes from the (otherwise wonderful) nursing staff. Case in point: DH and I both had communicable disease screening done last June/July. The nurse I’m communicating with told me that we’ll both need to be retested.

Now, I had several blood transfusions due to hemorrhage after delivering the girls, so I don’t mind being retested, although it’s been far less than a year and I’ll have to pay out of pocket. But I couldn’t understand why DH would need more testing. We don’t have  MFI, so we get to try to get pregnant the quasi-old fashioned way: drugs, ultrasounds, and sex. DH will be going nowhere near the RE’s office, and will therefore pose a risk to no one but me. Thus, I asked why he needed to be tested.

The nurse informed me that it’s an FDA requirement, because “he might expose you [me] to something.”

At first, I was righteously indignant at the FDA. In the first place, they have no business in my sex life. In the second place, do they really think that the only way I’ll be “exposed” is if I have treatment? They are protecting me from exactly nothing. Finally, why in the bloody hell should the government force me to pay for testing just because I need injections and ultrasounds to get/stay pregnant?

But after being indignant for a while, I went searching for the actual government regulation. Because I’m a) curious, and b) stuck at home in pain with nothing better to do. You know what I found? 21 CFR 1271.90 (2), which is the regulation that requires testing for “human cells, tissues, and cellular and tissue-based products” (aka sperm/egg/gamete donations) specifically exempts “Reproductive cells or tissue donated by a sexually intimate partner of the recipient for reproductive use”. In other words, DH should not need to be tested. (Should anyone be aware of other relevant regulations, please let me know. In all my searching this was the only thing I could find.)

Thus, the bullshittery of frustration, bad information, incompetence (wait until my next post about good ‘ol CVS Caremark), and frustration has begun again. Happy f-ing New Year.

Bear With Me

It’s now been a month since we said goodbye. I have lingering complications that have left me in more pain than I could have imagined. If they don’t resolve on their own, I’ll be facing surgery at the start of January. I’ve been told that surgical recovery is two weeks of true agony when heavy narcotics are needed, then six weeks of pain. This terrifies me because I left the hospital on 800 mg of ibuprofen every 6 hours, 650 mg of Tylenol every 4 hours, and 2 Ox.ycodone every 3 hours, and that did NOTHING for the pain I was in. I can imagine how much worse it will be after surgery, and I know that the drugs just don’t help. Overall, more difficult choices ahead.

That all reflects the physical part of healing. The emotional part is another matter. I have my good moments and my bad moments. I don’t think the postpartum hormones help, or the fact that I’m still in too much pain to return to my “normal” life, so I’m left with little to do. I hope the physical healing can help to be a catalyst for the mental healing. In the interim, I hope you’ll indulge a few things I want to share.

I only took one “bump” picture my entire pregnancy, because I was so sick the whole time I didn’t feel like it. Although the girls are gone, I feel like I need to share this. Why? Because it’s one of the last good memories I have with them. Because I hate that there are times it feels like they weren’t real, and by sharing this photo, I can disprove that feeling. Because, out of everything that happened that I might have controlled, I get the most upset that I never got to see or hold Zoe, and this photo reminds me that I got to hold her for 18 weeks and a day. Maybe just because it’s a talisman to me, that proves that DH and I can make beautiful, healthy babies, so that gives me hope that one day we’ll get to be great parents to babies we can take home and raise.

The other picture I want to share is of the girls’ bears. I mentioned how amazing the Fairview Southdale nurses and doctors were. Also amazing are two other parents, who also lost a child at Southdale. They started a program to give small teddy bears to other parents delivering babies who will never come home. This is a lousy picture, taken via my cell phone a few hours before we left the hospital. But these bears are so precious to me. Seeing them snuggle each other gives me hope that my girls are out there somewhere, taking care of each other.  In the first days home, DH would bring them to me, and we’d just hold each other and the bears on the sofa and talk to our girls. I have conversations with the bears most days. Today we went to the picture window and I showed them the six deer who were grazing in our yard. Am I crazy? Well, of course, we’ve known that for years! But does it help to think that maybe our girls are up there somewhere, listening as I talk to their bears? Yes, it does. To the parents who started this program: I am so, so sorry that you went through a loss, but so, so grateful to you for what you’ve done with it.

So Many Thanks

I feel like there are so many things I need to say about what’s happened in the last few weeks and months, but I’m not sure I have the words to say any of them. Let me start with a few things that are top of mind, and that’s thanks to our amazing families and to the incredible staff at Fairview Southdale hospital.

My mom came out to visit around 16 weeks and did an amazing job getting the nurseries ready for the girls. I was still feeling pretty awful, but mom took care of the painting and the yard. Had things ended the way they should, our girls would have had beautiful rooms thanks to my mom’s help.

When Zoe’s water broke at 17 weeks, my MIL flew out and was there by 9 that night. My dad  and step mom were there by 6 the next morning. I would not have made it through the last two weeks without their help and love. They took care of everything for me when I was stuck on bedrest and half out of my mind with pain. They also stayed with us when I went into labor. My Dad and MIL drove DH and I to the hospital when I was sure Alexis’ water had broken, and they stayed all night in the hallway and waiting room until Alexis was born, and then continued to stay until close to midnight that day after Zoe was born and I was out of surgery and conscious again. They kept us fed and clean and kept us company when being alone would have been too hard. I will never have the words to thank then enough.

I also need to recognize the amazing staff at Fairview Southdale hospital in Edina. From the first night there when Zoe’s water broke through labor, two rounds of surgery, and a multi-day stay, every single nurse and doctor we interacted with was compassionate, attentive and understanding. When my OB was called away to deal with another emergency as I delivered Zoe and started hemorrhaging, the anesthesiologist (who has the exact same name as my dad) stepped in with no hesitation and in all likelihood saved my life. I will be forever grateful to the team there for their care and compassion.

There are quite a few more thank yous needed for friends and colleagues who kept us in their prayers, but I’ll save that for another day. For now, I am so grateful for the wonderful people who did everything possible to make the worst possible situation as ok as possible. 

Zoe Grace and Alexis Marie

I am someone’s mommy.

At 12 weeks, we had the CVS done that showed we were pregnant with two healthy girls. I spent the next five weeks in a state of joy, despite the horrible morning sickness and constantly feeling terrible. We shared with family and friends and we waited excitedly for March when we’d get to meet our girls.

Their names were Zoe Grace and Alexis Marie.

At 17 weeks exactly, Zoe’s water broke. The three of us held on together for one more week on home bedrest, in the worst agony of my life due to other complications. At 18 weeks, Alexis’s water broke as well and I went into labor.

Alexis Marie was born a few minutes before 8 am on November 7. DH and I got to hold her and tell her how much we loved her. Those minutes will always be some of the most important of my life. She was so beautiful and perfect and tiny.

When I had not delivered Zoe nearly 8 hours later, I was moved from Pitocin to cytotec. I started having convulsions, and was not entirely conscious when Zoe was born around 5 pm. I know DH held her up to me so I could say goodbye, but I have no memory of that. He tells me she was perfect, too. I believe him.

I started hemorrhaging after delivery and was taken to the OR for two rounds of emergency surgery. I lost about half of my blood volume, but the doctors were able to stabilize me and save my uterus.

Zoe Grace was 8 inches long and 6 ounces. Alexis Marie was 8 inches and 5.5 ounces. I love them both more than I thought possible and miss them more than I can say.

I don’t know what the future holds, but I do know that these were my girls, I am their mommy, and I will always love them.

Like Mother, Like . . . .

I know I've been absent for a while. Too long. In this case, no news is a combo of good news and horrible morning sickness.

Let's start with the morning sickness. Every day. Nausea. Burping, oh dear god the burping. Uncontrollable retching. Vomiting. The only time I didn't feel like death was when I was asleep. You'd think that's good, right? Because most pregnant women get really tired in the first trimester. During my first pregnancy, I got the best sleep of my life until it ended at 10 weeks. My head would hit the pillow, any time of day, and I'd be out.

Now? Nope. No sleep. Why, you ask? Because I've managed to develop a case of pregnancy-induced Graves Disease. That means that my thyroid has gone hyperactive. My heart is constantly racing and feels like it's pounding in my chest. My ability to sleep past 2 am is minuscule, and I have trouble falling asleep. Add those symptoms to horrific nausea and you get a really special brand of misery. It kept me off the computer unless I needed to be there, hence the radio silence.

I asked my OB for something for the nausea. At that point, I was down 7 pounds from my starting weight, which I told her. Her response? "Yes, it's worse with twins. Try eating crackers." It was a 'let them eat cake' moment if ever one existed. Needless to say, I'll be seeing other OBs in the group from here on out.

But that takes us to the good news portion. Two weeks ago, I went to the U of M's MFM center for CVS testing on the babies. After that, DH and I held our breaths and waited for the next shoe to drop. It never did! The FISH results revealed two healthy girls! We are over the moon excited.

I got the babies' full karyotypes back yesterday. The genetic counselor was great and told me everyone was healthy. Then she told me that Baby A is a totally normal 46xx, while Baby B is a 46xx with a pericentric inversion of chromosome 9. I guess there's no denying that one is mine!

I am madly in love and desperately hopeful that I'll start feeling human again soon.

Maybe They Are

Maybe they are. . . my lines, that is. Second ultrasound was on Tuesday. I've been really nauseous. I threw up for the first time over the weekend, and it's been mind over matter to keep from heaving at various points since then.

Despite that, the 'what ifs' crept in.

What if your morning sickness is just psychosomatic?
What if they stopped developing, but your hcg is still up so you're still sick?
What if they turn out to have heads shaped like cornmeal muffins, because that's the only thing you're eating?

It wasn't pretty.

The ultrasound on the other hand, that was pretty. Two perfect babies. They've gotten so much bigger since 6 weeks. We could see brains and spines and arm buds developing. And both had beautiful, strong heartbeats. Watching them on the ultrasound probably goes on the list of the most amazing experiences of my life.

So that's it. I'm released to my OB. I have two more weeks of smurf crotch, and then I get to go drug free!

We still have to clear the genetic testing hurdle, and I'm scared of that one. I found out last week that I have a mutation of the ATM gene on my chromosome 11. That means I'm screwed up on both 9 and 11. I worry about what that might mean for these babies. But I love them, and despite the nausea and the burping, I am so damn happy to be here - almost 9 weeks pregnant, with two babies who have heartbeats!

Be Careful What You Wish For

Remember when I mentioned how messed up it was to want morning sickness? I also mentioned that even though it's messed up, I still felt that way, because it would give me some confidence I was still pregnant with growing babies?

Um, yeah. I got my wish. And while it does actually provide some infinitesimal measure of comfort that my hcg level hasn't tanked, it also doesn't help stop the fears of: 'what if one stopped growing?', 'what if they're both growing, but there are genetic issues?', 'what if there are no heartbeats at the next ultrasound?'

I will try to chalk this up to learning points #1 and #2 of being a parent:
#1: Your kid(s) will make you sick. Maybe that's via pinkeye or the cold going around school. Maybe that's via morning sickness. Either way, get used to it, it's unlikely to stop soon!

#2: You will always worry about your kid(s). You'll worry while they're growing inside you. You'll worry when they're out and struggling with friends or school or any of the million things that kids struggle with. The fact that you love them and want the best for them pretty much consigns you to a life of at least some worry.

While I'm getting used to those learning points, I'm trying to keep food down and not going near the computer as much, because I have this odd motion sickness from focusing on the screen. Since I was the girl who loved riding in the backward facing seat in the station wagon, and who read voraciously while driving, motion sickness is entirely new. Still, if less computer time means less violent nausea, well then I'll write to you again in the second trimester!

A Miracle or Two

The last 11 days have been some of the roughest in my memory. I have bled every single day. I bled on days I stayed still. I bled on days I was active. I bled while sleeping and while sitting on the sofa. I also cramped.

I told myself those can all be normal pregnancy symptoms, because they can.

As for the rest of my symptoms, they vanished. No sore boobs. No nausea. Nothing.

I told myself that can be normal too.

So I took a few home pregnancy tests. The cheapies from China. The Wondfos. A week ago, they were distinctly lighter than they had been. Took one this morning, at 6 weeks, 3 days. For those of you not into peeing on things, the dilution of your urine can have an impact. I'd "held it" for 5.5 hours. The line? Lighter than it was back on 13 DPO when I had my first beta done and only "held" for 4 hours.

That? That I couldn't justify away. There's no logical reason for a super light line. Today was ultrasound #1, and with a light line, I figured there was no chance of a happy ending. I took the afternoon off work and planned on spending it coordinating a d&c in the coming days.

But I guess miracles do happen. Because yesterday, three days after my 10th wedding anniversary, and on the due date of my first loss, the ultrasound showed two perfect heartbeats.

We have a long way to go yet, but for this moment, I'm head over heels in love.

On the Way Out?

Severe cramping yesterday. Awoke to brown spotting and more cramps. The end, I guess?

Then There Were None

I should be five weeks exactly today. It was right around now that my first pregnancy stopped developing, although I didn't know it for another five weeks. 

All my symptoms vanished yesterday. The bloat's gone. The indigestion is gone. My boobs are still sore, but not as bad. There is absolutely no mild nausea any longer. Even my racing heart rate has slowed down.

How utterly fucked up is it that I'm sitting here hoping for a serious case of morning sickness? I mean, really, who wants nausea and puking? Who wants to feel terrible? Women who've had losses and would do anything to know, on a daily basis, that their pregnancy is still progressing, that's who. And I fall into that group. 

Thus, I sit here, desperately hoping for the best, but expecting to see another loss when I go in for my first ultrasound on the 16th. Expecting to hear, again, that there's no heartbeat. Our tenth wedding anniversary is on the 13th. We're going away for a long weekend to celebrate. How do I celebrate now?

Risk Hope?

In early pregnancy, doctors expect hcg levels to double every 24-72 hours. A 48 hour doubling time is considered good and a promising sign. There is a bit of data to show that longer doubling times, while not automatically a problem, are correlated with worse outcomes.

My initial hcg was 249.9 on 13 DPO.

My second hcg was 837 on 15 DPO.

That's a doubling time of 28 hours!

Those are really damn great numbers. (That's the first time I've been able to say that about ANY of my test results in the last 8 months.) Those are numbers that mean this isn't another chemical pregnancy. But my first pregnancy ended in a blighted ovum, which would have had much higher hcg levels than those above. And that means these numbers don't automatically mean a "take home" baby.

So, do I risk having hope? I want to be hopeful that this pregnancy is going well and will stick around. I want to be hopeful that I'll see a heartbeat in 16 days. I want to be hopeful that maybe, just  maybe I'll get a happy ending.

Don't know what the answer is, but I'm going to stick with an affirmation a woman in my loss group shared: Today I'm pregnant and I love my baby.

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. 

Is There a Code for That?

So I'm expecting to start Follistim and Estrace next week. To give you an idea of the cost, according to Walgreen's specialty pharmacy, they'll bill my insurance $1,800 for 6 days of Follistim.

Anyhow, my insurance will cover Follistim if it's not being used for procedures related to IVF. So, IUI & related procedures = covered. IVF = self pay.

I am not doing IUI or IVF. I am taking drugs and having sex.  (As a relatively prudish straight-arrow, those are words I never expected I would type!)

The insurance company, because of the IVF limitation, will not authorize Follistim unless I can provide a procedure code. Because the procedure code tells them if it's for IVF or not. There's one big problem here: there is no procedure code for "have sex!"

I am stuck in this infinite loop. First, insurance assures me it will be covered, since I'm not doing IVF, so my doctor should submit an authorization request. As soon as my doctor submits the authorization request, insurance requires a procedure code. Then, insurance tells me there's no procedure code for sex, and I remind them that sex is not IVF, at which point they agree it should be covered.

GAH!

I've now wasted spent more than two hours on the phone with the various parties to this BS.

"Just relax and it will happen" - a phrase that is applicable to neither getting pregnant, nor getting insurance preauthorization.

Verdict is. . . .

There are times when I feel truly bad for medical professionals. They spend years, decades even, studying and training. They continue learning as they practice and complete CE. Still, the human body is an amazingly complex system, and not every human's complexities follow an expected pattern. That means there are times when the best explanation a medical professional can give is, "I don't know" or "It doesn't make sense."

So, what was the outcome of my follow up appointment? Well, the saline sono, taken in early May, and the HSG from last Friday both suggest a horrendous case of Asherman's syndrome. But both of those are imaging techniques that don't directly visualize the uterus. The hysteroscopy, with photos taken after the saline sono but before the HSG, shows a normal uterus. The surgical notes written by the doctor who performed it didn't indicate any evidence of Asherman's, or anything other than mild scarring. The actual pictures should be the gold standard, but they are completely inconsistent with the sono and HSG. So the verdict? "It doesn't make sense."

Where does that leave us? Well, we could keep doing tests. Maybe we'd start getting consistent results, maybe not. Either way, we've now done all the tests that can be done, so we'd have to start repeating things. Verdict: probably not enough incremental value to be worth the drawbacks. Alternately, we can go back to the original plan: an injectable cycle in July, with monitoring of lining and follicles. Verdict: This approach will should tell us how my lining responds, which is a critical part of the question. The risk is that it won't tell us if both tubes are open. We could spend the money and the time on the cycle, and ovulate on the left side, where we don't know if my tube is open.

Total cost of more testing versus an injectable cycle will probably be similar. If they run multiple tests, that would be more expensive. It all comes down to a question of what really matters? And what really matters is: can I grow a lining that will support an embryo? Going the injectable route should answer that, because if I do have severe Asherman's syndrome, I won't grow sufficient lining no matter what medications they throw at me. If my uterus is healthy enough to grow a lining, it probably means the HSG was flawed, and I'm not as worried about tubal patency.

So, we will try the old fashioned way this cycle. We'll pray for a healthy, fully implanted embryo out of that. If I do get a positive test, we'll monitor the hell out of it! I am not optimistic, since I've had continued spotting since the HSG, but hey, I'm not going to turn down the excuse to spend some quality time with DH. ;) If this cycle doesn't work out, I call C.CRM on Day 1 and go in for Day 2 or 3 labs and an ultrasound, and then we start drugs and see what happens.

How will it all work out? Well, I'll give the most common answer from my own profession, which also deals with human beings and their irregularities: "It depends!"

Before and After

So, I love me a good before & after picture. Home reno before and after? Yes! Haircut before and after? Check! Recipe ingredients before to beautiful meal after? Bring it on! Today's before and after might not be for everyone. Today's before is my uterus at the start of the operative hysteroscopy. The after is my uterus after the scar tissue was cleaned up. If you don't enjoy viewing pictures of people's internal organs, don't scroll down.


So, here's the before photo. It looks rather like a tunnel, no? To the left and right are the ostia, or the openings to the fallopian tubes. From what the doctor explained, some of the white patches are scar tissue. Overall, there isn't much white where it shouldn't be, which means there wasn't much scar tissue from the January d&c.

Now for the after photo. In this photo, you can see everything is smooth and pink. There's less scar tissue, and the pink suggests that my endometrium is healthy and should be capable of a pregnancy.

There are two layers of endometrium in a healthy uterus, a basal layer, which remains at all time, and a functional layer, which is shed monthly. We're pretty sure I have trouble with my functional layer not getting thick enough, or having the correct pattern, to support a pregnancy. However, based on these photos, which were taken May 23rd, there shouldn't be anything blocking my uterus. This is what makes Friday's HSG so inexplicable.

At this point, I'm praying for an answer that isn't the end of our journey, and I'm focusing on the after picture, because it looks like it should.

Cause or Effect?

Just over five years ago, shortly after I became unable to eat gluten, I had an incident. One afternoon I started having extreme bloating, and the kind of horrific gas that usually accompanies gluten-poisoning for me. By the early morning hours, I was in the bathroom, while my digestive system emptied itself in waves. Once again, that's what normally happens when I come into contact with gluten. That's why I religiously avoid it! Along side the normal symptoms was intense abdominal pain. It hurt to touch  my stomach. It hurt to put on clothes and have my seatbelt across me. Going over bumps hurt. That was something I'd never experienced before.

I went to the doctor the next morning. She was worried about my appendix, so she sent me for an MRI. The MRI showed such extreme swelling in my intestines that the "T" shape of my IUD, and the uterus containing it, was actually horizontal instead of vertical. My intestines had pushed my uterus out of the way with their swelling.

What caused that? Well, after the MRI, a different doctor, a DO, sat down with me and asked me what I did for a living. When I told him I was a manager, he held my hand, and while gently patting it, informed me that I had an intestinal blockage caused by too much stress and not enough fiber in my diet. Then he turned to my husband and told him to "take better care of her." Mind you, he never asked about my diet, or about my stress level. I guess he just assumed a woman manager must be stressed, eat crap, and need care from her male protector.

I saw a GI specialist shortly thereafter. He looked at my films, then asked me detailed questions about my diet (30 grams of fiber a day via beans, brown rice, almonds, and fruits & veggies - documented via months of My Fitness Pal logs) and my stress level (pretty low as I'd just gotten my dream job managing an awesome team of people doing work I loved). When he had the answers, he politely told me I was an idiot for eating week-old leftover rice. He thought I'd gotten food poisoning, which explained the swelling and pain.

To this day, I don't know which of them was right, but although my stress level has gone up at times, and my fiber intake has gone down, I've never again had the issue - and I've stopped eating brown rice!

The day before the HSG, I was feeling oddly bloated. I had assumed it was because I'd upped my intake of gluten-free oats, which I have trouble with. I'd made a mental note to change my breakfast meal plan next week. In the hours after the HSG, I moved from slightly bloated to massively bloated, and in substantial pain. I couldn't take a deep breath without pain. I couldn't stand up straight without pain. I spent hours in the bathroom early Saturday morning, alternating between the floor and the toilet, in agony. It was like the experience 5 years ago, only worse.

I'll ask my doctor when I see her, but I wonder if I had swelling in my digestive tract before the HSG? If my uterus had been extremely compressed due to unhappy intestines, might that have produced the never-before-seen disappearing uterus on the HSG? Alternately, it's possible the digestive symptoms could have been caused by stress or a reaction to the contrast. Ugh. No clear answers, just more unhappiness.

Reeling

The HSG went catastrophically badly. To quote my RE, "I've never seen an image like that in my career." The radiologist was also mystified.

Instead of seeing a normal uterus and two fallopian tubes, or hell, even a unicornate uterus and one tube, there was the tiniest nodule of a uterus and one tube. In other words, the HSG showed fundamentally no open uterine cavity. No uterine cavity means no pregnancy.

I had a hysteroscopy a month ago - I have the images from it and the OB who did it said everything looked great. The hysteroscopy I had to remove my first IUD back in 2012 also ended with being told I had a good looking uterus. How the fuck did I go from there to an image with no uterine cavity and only one tube? The only HSG images even remotely similar to mine are ones with tremendously severe Asherman's - and my HSG showed even less of a uterine cavity than those.

If this isn't just a fuck up in the testing, which is what I'm praying for, then I'm scared we're at game over. I'll regroup with my RE next week if I can get an appointment. Meanwhile, I'm spending the weekend  trying to remember to breathe.

I will get through this. Somehow, I will get through this.

Not Gonna Be A Problem

I'm supposed to start taking antibiotics for the HSG tomorrow. I went to the pharmacy to get them today. The pharmacist gave me the use instructions (take two before the procedure, one each day after). Then before I left, she asked me "Oh, are you on oral birth control?"

I knew, immediately, that she was asking so she could warn me that antibiotics reduce the effectiveness of birth control. So I did the only thing I could: I laughed. I couldn't help it.

After that, I told her that no, I wasn't on bc, but even if I was, I'm pretty sure the efficacy wouldn't be lowered any for me by antibiotic use!

Some times you just have to laugh.

Wish me luck tomorrow?

What Goes Up, Must Come Down

Am I the only one whose moods can shift on a dime?

Yesterday, I felt really good after my appointment. I had a game plan. I trust this doctor, even when her advice conflicts with something I might be willing to try, because she refers to research. Everything seemed to be going well. I dropped DH at the airport after the RE appointment and then headed home to finish up work that needed to be sent out that day. Things were looking up.

Then I pulled onto my street to find the beautiful tree in our yard blocking half the street. Not going to lie, that sight took me back down. I love our house for the many trees here. The tree in the front was beautiful. Instead of getting my work done, I scrambled, at 4:30 pm, to find a tree service to come out and remove it.

While I was making calls, the next storm moved in, with thunder, lightning and heavy rain. Thus, it should not have surprised me to get a text from DH saying his flight might be cancelled. Half an hour later, he confirmed that he wasn't heading out that night, but would be on the 4:45 am flight the next morning. Thus, I drove through the flooding to bring him home, worked until 9:00, then slept for a few hours before getting up at 3:00 to take him back to the airport.

Now, tired, cranky, stuck working from home so I can meet the tree guys, and out $1,500 for the tree work, I'm feeling vastly more down. I'm grateful to be able to work from home and afford the cost, but it's still a bummer. I guess the up(side) is that I'll have fewer leaves to rake this fall?

We Have a Plan!

Today's consult with CCRM's local office went well. The doctor asked me to sum up what's going on in my own words, but also seemed to be well versed in my medical history. It was clear she had read all the files sent over, as she brought up things I didn't mention. She agreed with the goal of getting a pregnancy that lasts for 9 months, and didn't claim the issues to date were bad luck. While she agreed that my AMH means we should move with some speed, she also reminded me that it's really most relevant to IVF. Since we've gotten pregnant 3 times thus far, she told me, nicely, to stop worrying about it.

Unlike my OB, who said that uterine lining thickness only matters for IVF, Dr. B at CCRM expressed concern about my lining based on the sonohystogram in May. DH asked her to explain and she said that the lining helps to nourish the pregnancy during/around implantation, and therefore is important. Her target is 8mm. She noted that thin lining can occur when you have a short follicular phase. Alas, that isn't an explanation for me, since I typically have a 14-17 day follicular phase, which is normal. Increasing estrogen should help build the lining, and we know from my last labs that my estradiol is low.

Given all of this, her recommendation was twofold. First, proceed with additional testing of other potential factors to explain the losses. I'll cover the testing in a later post. Second, unless that testing identifies a cause, we'll treat the lining issue. Doing that will entail FSH injections and vaginal estrace to build lining, along with monitoring and timed intercourse. Post ovulation, I'll use progesterone for luteal phase support, although she doesn't think there was any issue with my progesterone level of 14 during the last chemical pregnancy. Testing is to be completed this cycle, monitoring and medication next cycle.

I also asked about lifestyle changes I could make. I was told no caffeine, no alcohol, keep eating fruits and veggies, keep exercising. Easy peasy - all of that I already do. I asked about DHEA due to my low AMH and she said she'd just read a meta analysis that found DHEA had no impact on DOR other than causing acne. She's taken it off her recommendations list. Note to self: she told me she'd give me her supplements list, but she didn't, so I need to follow up.

Overall I feel really good about this as an approach to see if we can address the miscarriages. I have a few follow up questions I'll need to ask the nurses, that didn't arise until after I looked at the written instructions, but I don't think that will be a huge problem.

From Type A to Type D-

I'm a few days off from my consult with the RE, and trying to understand why my recent test results are impacting me (mentally) the way they are. That low AMH number is really eating at me. AMH is a gauge of ovarian reserve. It gives you a ballpark idea of how long you have until perimenopause. If you need IVF, it also predicts how your ovaries will respond to stimulation. A few studies have shown that independent of these things, low AMH also correlates with lower live birth rates, but the correlation is relatively small and hasn't been consistently reported.

All it takes to get pregnant is a single egg and I've proven, three times now, that I ovulate and produce eggs. So why does my low AMH bother me?

I can come up with two reasons. Number one is that I just wanted some tiny piece of good news amidst the shit show that is this process. I really wanted to be able to say 'cool, I don't have to worry about that!' or 'groovy - I'm normal in at least one respect.' Instead, I'm so far off normal that I just have to pray we don't need IVF, because my ovaries are not likely to respond well.

On reflection, reason number two is pretty embarrassing. You see, if you haven't noticed from earlier posts, I've been an overachiever for most of my life. I'm a Type A personality that's gradually relaxed into a Type A-. I graduated magna cum laude. I went to a top PhD program in my field. I moved up the career ladder quickly. When I decided to run for the first time, I set my sights on a half marathon, and completed it. My first organized bike ride was a century (100 miles). I screwed my left knee up so badly during the century that I couldn't put pressure on it after mile 70. But I don't like to fail, so I rode the last 30 miles only my right leg. Like I said, I achieve.

I achieve, but my ovaries don't. My ovaries apparently missed out on the overachieving message. Despite the fact that I went 15 years without periods, and therefore spent 15 years not drawing down my ovarian like a normal woman, I am still running out of eggs. In other words, my ovaries are underachieving. As much as I'd like to say that I don't care, that the only thing that matters is getting one good egg, apparently that isn't true. Given the mild desire to hyperventilate that appears whenever I think about my test results, I must care a lot.

We'll see what the RE says. My numbers are slightly mysterious. AMH is low, but so is estradiol, and FSH is normal for my age. That's an unusual combination. Usually low AMH correlates with high FSH. In cases where FSH is not high, it's often suppressed due to high estradiol. Having both low estradiol and normal FSH, along with low AMH appears to be atypical. Maybe there will be some logical explanation and I'll feel better. Maybe not. Here's hoping I can elicit a bit more Type A out of the old ovaries!

Reminder to My Future Self

One of the hard parts about RPL, or probably any other not-terribly-common-but-emotionally-devastating experience, is the feeling of being alone. The feeling that no one understands what you’re going through. When well-meaning loved-ones say things like “it’ll be ok, you can always adopt” or “if you have to go through a few more miscarriages to get a good egg, so what?” or “everything happens for a reason,” it becomes extremely clear how little other people understand.

FYI, if you’re reading this blog, I want you to pinky swear, right now, that you’ll never utter any of words in quotes above to someone going through IF or RPL. If a reason exists to explain three miscarriages, $3,000 in hospital bills, and enough emotional pain that I’ve cried more in the last six months than in my entire life, it's a shitty one. If you smash your thumb with a hammer, do you tell yourself, "it happened for a reason?" No. You say a few unprintable words and feel a lot of pain. Even if it DID happen for a reason, is pointing that out in the midst of the swearing and the pain helpful? No.  

In the lonely space, I’ve looked for others who can help me feel less alone. They’re out there. I wish they weren’t. I wish no one else had been through this, but even though we’re only the 1%, 1% is still a lot of couples with an unbearable number of losses. I respect every one of those ladies, I grieve for them, and I thank them for sharing so that I don’t feel so alone. I’m also trying to learn from them.

One thing I’ve noticed is how bitter some RPL survivors are. I understand it. Hearing pregnancy announcements, seeing others have what you are desperately trying for, realizing that what will cost you thousands of dollars and countless heartache comes free to women who don’t want it . . . all of that is really hard. I completely understand how those experiences breed bitterness. Every woman has the right to feel whatever she feels.

Here’s my hope for myself, though: I hope I can avoid the bitterness. Is this shit unfair? Yes! Is it awful? Yes! Has it become a huge part of my life? Unfortunately, yes. But does it eclipse all the other wonderful things in my life? I hope not.

I grew up with parents and grandparents who loved me. I have an incredible husband. I have a career that I get great satisfaction from. I get paid well. I have friends who put up with me and make me laugh. I’m able to be physically active every day. I live in a beautiful place. Even if I never get to see a heartbeat on an ultrasound, I am so fucking lucky. 

I have never taken that luck for granted. I hope I never will. I hope that in those moments when the voice of bitterness kicks in, I can remember just how good things are. I’m here, in this life. I'm not a Yazidi girl being held by ISIS in Iraq, not an expectant mother with Zika in Venezuela, not any of the other horrifyingly unfair situations others are in. When it comes to unfairness, when I look at the rest of the world, I can't claim that I got the short end of the unfairness stick.  

So I'm posting this today. Seven months, three losses, two surgeries, one DOR diagnosis, and thousands of dollars into this journey, I'm posting this. I'm posting it to remind my future self. Here's hoping she reads this. 

DOH! DOR

On Thursday, I learned that going to the fertility specialist at your OB's office is like going to the cosmetic surgeon at your dentist's office. He may know more about cosmetic surgery than the other dentists, but he sure isn't an expert. In this case, the OB had never heard of AMH, per his own words, not my assumption. He also claimed that endometrial thickness and pattern had no implications for pregnancy/miscarriage.

I passed him a 2015 journal article whose abstract noted sustained pregnancy is extremely rare with lining <6mm. He got flustered, insisted it wasn't really an issue, and couldn't provide any data to support that.

Anyhow, based on the numbers, my ovaries are in their mid to late 40's. AMH is 0.4, FSH is 9.5, E2 was 18. Not good. We're moving on to talk to an actual miscarriage and fertility specialist. I've scheduled an appointment with CCRM's local branch in about two weeks.

Oh yeah, the best part of the doctor visit? He told us the miscarriages were just really bad luck and that we should start trying again. He said I should ovulate soon, and I told him I had already, three days ago. He asked "did you try?" I replied, "You told us we had to wait two weeks after the hysteroscopy, and that isn't until NEXT Monday, so no, we didn't try." At that point he got upset, raised his voice, and told us to go home and try immediately. Seriously, dude, my temp's been up for 3 days. The egg ship has sailed, no matter how much you yell at me for following your bloody instructions!

Moral of the story: go to a specialist for specialist advice.

Cheers!

Well, that's interesting. Up until last cycle, I've ovulated day 15 or 17.  During the first three or four cycles of TTC, I started using OPKs on CD10 and typically had a lot of negatives before I got something dark enough to consider it a positive. I don't ever get resounding positives, but I've learned what the maximum darkness I can expect is, and how that typically correlates with the temperature shift that signals ovulation.

In addition to OPKs, I track my basal body temperature and other fertility signs. The one challenge I have is extremely broken sleep. I'm up every two hours or so, and when gathering basal body temperatures for fertility purposes, it's ideal to have 4 to 5 hours of unbroken sleep. Hah! Wouldn't I love that? Still, most of the time I temp around 2:20 am (after a midnight wakeup, and before a 4:something wakeup), and I always see pre and post-ovulation patterns.

Anyhow, with CD15-17 ovulation, I decided it was a waste to start testing so early. I get a little neurotic wondering if I won't ovulate for some reason, and the early negatives make that worse. Thus, for the last two cycles, I didn't use an OPK until CD12. Last cycle, to my surprise, I ovulated on CD14. With the hysteroscopy last week, I expected that ovulation might be delayed this cycle, so again I waited until CD12 to use an OPK. It was about as dark as they ever get for me. This leaves me wondering: did I ovulate on CD 12/13?

You would think my temp could help answer this question, right? I say again, Hah! Yesterday I woke up at 1:00 and 3:30, instead of 2:20. My 1:00 am temperature was normal for pre-ovulation, my 3:30 am temperature was normal for post-ovulation. Only time will tell if it stays up and I ovulated or not, but I can't find any evidence of women having early ovulation after operative hysteroscopy, so I'm perplexed for now. What I wouldn't given for a moment-by-moment understanding of what's happening inside me!

Perhaps the explanation is that I did something this cycle that I almost never do. I had several glasses of wine. Since we are benched from surgery and I figured ovulation would be delayed, I had some of a really nice bottle of zin with a dinner out on Saturday, CD10. My Sunday morning temp was up at post-o levels, which is what happens when I drink. I didn't have anything to drink Monday night, so alcohol doesn't explain the high temp today. It does make me wonder if the alcohol impacted ovulation? Either way, it was worth it. That 2008 Rombauer Fiddletown was magnificent!

A Waiting Game

Patience has, quite frankly, never been my strong suit. I suspect much of this is the result of how I viewed the various stages of my life. Highschool was the thing you did so you could get good enough grades/work/volunteer experience to go to college. College was the thing you did so you could get good enough grades/research/work experience to go to grad school. Grad school was the thing you did so you could get that first job, which would eventually get you to a stellar career.

Every stage was an opportunity to work my ass off, excel, and therefore get what I wanted in the next stage. Every stage was something to be conquered before moving on to the next. Because the focus was always on the next stage, I spent a lot of my life ‘counting down’ – waiting for the end. I counted the days until the end of college semesters. I counted the days until the end of grad school semesters. My “coping” strategy for getting though a stage was to work harder, and that typically paid off with better outcomes in the next stage.

All of that is nice, and it’s left me in a really good place life and career-wise, but it hasn’t taught me how to cope when “work harder” isn’t an option that helps. When it comes to repeat pregnancy loss (RPL) no amount of work on my part is going to improve things. I already eat a good diet, maintain a healthy weight, and exercise a good amount. None of those things probably matter, but even if they do, there are no logical changes I can focus on working toward that might result in a better outcome. In other words, my normal coping strategy has failed me, and I have to revert to patience as a coping strategy.  

This is tough. Thursday, five days from now, will be my follow up appointment. It will also be when I find out my cycle day 3 test results. I expect that Thursday will be when I find out if we’re just dealing with RPL, or if we’re adding infertility into the mix, too. I’m worried. I’m 36, almost 37. Based on that alone, there’s a good chance I’ll be diagnosed as “diminished ovarian reserve.”  I understand that knowing my test results today won’t change anything when compared to knowing them on Thursday, but I’m still not finding it easy to wait patiently for Thursday. Or to wait patiently to ovulate and then get a period so I can start my next cycle. Or for any other waiting involved in this process of trying to conceive (TTC)!

It would probably be better for my mental health, physical health, and eventual success if I could wait out life patiently. I would say ‘that’s what I’m going to work on,’ but that sounds like my normal approach. So I’ll focus on alternate coping strategies (blogging, anyone?), appreciate how wonderful my day to day life is despite these heartbreaks, and keep moving toward Thursday. .  with my 5 day counter ticking down! J

It Went Well (Sorta)

Monday was hysteroscopy day. Surgery was scheduled for 1:50 pm, so I got to enjoy the fun of no food or liquid for most of the day, along with the anticipation of someone getting up close and personal with my reproductive system. Since Dr. S could only guess based on the ultrasound that I had scarring or fibroids, I was very interested in knowing what Dr. C (who performed the surgery) found. Thus, after surgery, I asked my husband what the doctor had told him. The only thing DH could remember was “it went well.” GAH!

On that front, it did go well. I was done and on my way home by 4:30, and other than a really sore throat, some mild cramping, a bit of bleeding, and the occasional shooting pain coming from the direction of my uterus, things are normal. Compared to the d&c in January, I was much more hungover from the anesthesia this time.

While DH didn't know much, Dr. C did, and he called me at home Tuesday night to check on me and follow up. He told me he found only minor scarring by one of my tubes and he took care of it. He doesn’t expect there to be any new scar tissue that forms, so he didn’t use a balloon catheter. He’s bumped up my follow up appointment to June 7, and we’ll talk about next steps then. The down side of “minor” scarring is that it’s unlikely to be an explanation for the repeated losses. So we’re not much farther along than where we started.

So, what’s ahead? I should be getting my cycle day (CD) 3 blood work back. That will tell me how close to diminished ovarian reserve I am. If the answer is that I’m very close, I lean toward more aggressive treatment now. If my numbers are ok for my age, hopefully we can try less costly and less aggressive options first. I’ll also be discussing my thin uterine lining with Dr. C. He said it’s probably not a factor, but a lining under 5 on the day before ovulation is not promising, and I have the research studies to back that up. So, we’ll see. Wish me luck?

What's Half of "I Told You So"?

Two Fridays ago, I had my saline sonogram. This entailed filling my uterine cavity with saline and then using ultrasound to determine if anything was amiss. It was scheduled for CD13 for me. Going in, I would have bet on two findings. Coming out, it turns out I would have been half correct.

Bet #1: Thin uterine lining. Result: Nailed that one. The ultrasound showed one beautiful 20mm follicle, ready to go in another day. My lining, however, was less than half the thickness it should have been. Outcome: To be confirmed, but I expect I’ll be getting some hormonal support in the future.

Bet #2: Everything else will look fine. Result: Nope. At first things looked picture-perfect, teardrop shaped. Then the ultrasound reached the top of my uterus and discovered something, that, after further inspection, appears to run the full length of the right side. It might be a fibroid or polyp, but it’s probably scar tissue from the January d&c. Research shows that nearly 20% of surgical abortions result in uterine adhesions and scar tissue. I should not be shocked to fall directly in the 20%. Whatever it is, it doesn’t belong. Outcome: I win surgery to remove it. The ultrasound photos below show the thing that doesn’t belong.

Overall, these two factors combined provide a logical explanation for the two chemical pregnancies. The extent of the whatever that’s in my uterus could easily disrupt implantation. I’d like to say that this gives me hope that maybe we’ve found the cause of these losses, can fix it, and will have no further trouble with getting and staying pregnant. I’d like to say that, but I really can’t. Three back to back losses have taught me that hope is not a good thing. Hope makes you hurt. So, for now, I’ll focus on next steps, not expect any better outcomes, and be positively thrilled if a sticky pregnancy arises from all of this.

Speaking of next steps, the plan is to do a surgical hysteroscopy, and use a morcellator to remove the whatever. If it’s scar tissue, they’ll leave a balloon catheter in place when they’re done, to prevent reformation of scar tissue. I go in for surgery on the 23rd. Post-op appointment is June 15, so I hope to be cleared at that time. In the meantime, I’ll keep up diet, supplements, and exercise. I don’t know if they make a difference, but this was the first cycle in my life that I’ve ovulated on day 14, and that was the first positive I’ve had in a while!

Diets, and Exercise, and Supplements, Oh My!

On the whole, I would describe myself as someone who likes to be in control. I want to have my own space, make my own decisions, and I’m ready to live with the consequences of those decisions. Studies have shown the probability of successful conception among women suffering fertility problems is higher with a “healthy” BMI and diet(Chavarro, et. al., 2012, Ferti Steril.). Other studies suggest that diet can play a role in fertility, especially caffeine and alcohol.

Thus, I find myself at a decision point: do I make changes that will be unpleasant in my daily life in order to improve the probability of getting the take home baby I want? And for me, the answer is that I have to at least try those changes. I may not succeed 100%, but I’ll feel I’ve let myself down if I don’t give it a shot. So, what am I doing, and why?

Exercise. A minimum of five days a week, 45 minutes a day of exercise. Most studies show a positive relationship between exercise and reduced miscarriage risk (e.g., Zhang, et. al., 2011; Latka, Kline, & Hatch, 1999; Clapp, 1998, AJOG). Further, exercising 3 or more times a week is associated with the most positive outcomes. I’ve seen one study that suggested that intense exercise can have a negative impact on fertility, via miscarriage, even in women with a “normal” BMI (Madsen, et. al., 2007, BJOG). As a result, I’ll drop the HIIT workouts I’d been doing, and focus on a goal to ride 2,000 miles on my bike this summer. That will mean daily exercise of at least 30 minutes, with longer sessions on the weekends, and it should correspond to a reduced probability of miscarriage.

Diet. I’ve been gluten-free for about five years and pescatarian for nearly 20. No reason to change that, but I also eat way too much sugar and processed crap: Udi’s bread, YogurtLab Fro-Yo, protein bars, TJ’s greek coconut yogurt, chocolate – I’m looking at you! Inflammation may play a role in repeat pregnancy loss (Comba, et. al., 2015, Fertil, Stil.), although it’s not well understood. I have a history of juvenile rheumatoid arthritis, thyroid issues, gluten intolerance, and other allergies, all of which suggest my immune system isn’t my best buddy. Based on that I’m going to adopt a hard-core, Mediterranean-focused, anti-inflammatory diet. This is supported by research on luteal phase disorder (Andrews et. al., 2015, Hum. Reprod.), as well as research on inflammation in general.
Sadly for my taste buds, the processed food in my diet is going out. More veggies (kale, broccoli, asparagus, and their friends) and more fruit are coming in. I’ll still stick with my staples of lentils, quinoa, black beans, and chickpeas, but I’ll drop as much dairy as possible. This falls under the category of ‘things that are going to be really hard to do,’ given my love for chocolate, sugar, and processed-carb happy snacks. Still, I keep reminding myself that getting another “I’m sorry” phone call from my doctor won’t be easy, either, and I’d rather feel I’ve tried everything I can if I reach that point. . . see my earlier note on control.

Supplements/Medications. This one is controversial and I’ve spent more time pouring through journal articles than I care to admit. I’m proceeding on the hypothesis that I probably have egg quality issues, since all other likely causes have been ruled out. I also know I have a short luteal phase (10 days) and light periods, so pending further testing, I seem to have lining issues. Thus, I’ve focused on diet and supplements for egg quality and lining. What are some of the options out there, and why might you consider using them?

Melatonin, 3mg, at bedtime. Several studies have shown that melatonin positively impacts pregnancy outcomes. A very small study out of Japan showed improved serum progesterone concentration (>10 ng/mL during the mid-luteal phase) in nine of 14 women (64.3%) receiving melatonin supplementation, whereas only two of 11 women (18.1%) showed normal serum progesterone levels in the control group (Taketni, et. al., 2011). In addition, for IVF patients with PCOS, implantation rates in a melatonin-supplemented group were higher than those of the non-supplemented control group. Pregnancy rates were also higher, although not significantly. The findings suggest that the addition of melatonin to IVM media may improve clinical outcomes. (Kim, et. al., 2013). There is also research correlating melatonin and premature labor, although I haven’t delved into that space. There are few, if any, studies suggesting harm from melatonin.

DHA – A number of studies link Omega-3 consumption to positive outcomes for pregnancy. I think this one is pretty well accepted, so I won’t bore you with citations!

Myo-insolitol 2g dissolved in water, 2x/day. Several studies have shown that myo-inositol can regulate ovulation, improve egg quality, and enhance embryo development (Carlomango, Nordio, Chiu, Unfer, 2011, Eur J Obstet Gynecol Reprod Bio; Kamenovz, et. al., 2015, Gyecol Endicrinol). While it’s probably most effective for women with PCOS, I can find no studies showing harm, and quite a few showing benefit.

Ubiquinol – 100 mg, 3x/day. A relatively small study out of Egypt (N=100) of women with PCOS who took CoQ10 daily showed higher follicle counts, thicker lining (8.82 ± 0.27 mm versus 7.03 ± 0.74 mm), and more regular ovulation (54/82 cycles (65.9%) vs. and 11/71 cycles (15.5%)), and higher clinical pregnancy rates ((19/51, 37.3%) vs. (3/50, 6.0%)) in comparison to women in a control group who did not take CoQ10 (Refaeey, Selem, Badawy, 2014). Ubiquinol is the more bio-available form of CoQ10.

L’agrinine – 1000 mg, 2x/day. This one’s controversial, so do your own research. A small study (N=34) out of Italy looked at poor responding women undergoing IVF. Half received L’arginine in addition to stims, the other half did not. The treatment group saw improved blood flow, improved number of eggs retrieved, higher numbers of embryos transferred, and 3 total pregnancies, compared to none in the control group (Battaglia, et., al., 1999. Hum Repro.).

Pycnogenol – While this supplement has been studied mostly in men, it’s also been shown to have positive impact on reducing endometriosis symptoms (Kohama, Herai, Inoue, 2007, J Reprod Med.). I am somewhat skeptical as the authors of most studies I can find are the same (vested financial interest, perhaps), and the one meta analysis I can locate showed only studies with small sample sizes (Schoonees, et. al., 2012).

Low dose aspirin – 81 mg 1/day. My OB suggested this as a ‘it can’t hurt’ measure. There’s also a bit of research to suggest it can reduce inflammatory processes and thereby help prevent RPL (Radin, et. al., 2015, J. Clin Invest).

There’s an interesting question around how long to sustain changes in diet and supplements to see results. I can’t find good answers in the literature, but for the changes I’m making, I’m going to aim for three months to start and see what happens. That will take me through all the rest of the medical testing I need, and will probably start me down some more invasive and expensive paths, given my age. Here’s to healthy eating and a healthy body!

I Told You So

For the uninitiated, hcg is a hormone created in early pregnancy. While the starting number isn’t too important (although there’s some solid research suggesting that the value at 14 DPO is predictive of outcomes), the speed with which the number goes up is critical. A viable pregnancy will see hcg double roughly every 24-60 hours, with a 48 hour doubling time being expected. My 12 DPO beta was 14. My 14 DPO hcg was 14. Saying ‘I told you so’ is rarely as rewarding as you hope. This time is no exception.

So, we’re on to miscarriage #3.  During the call with the office, I did a few things: asked to find out which doctor would be a better fit for me (answer: Dr. J), paid the bill from my d&c (high deductible health plan deductible met for the year now), and booked my saline sonohysterogram for May 6. I should know at that time if there’s anything structural causing these losses. I had a hysteroscopy years ago to remove a traveling IUD, so I know there’s no septum or other permanent structural issues. I could have a polyp or other adhesion that’s grown since Jan ’13, though, which might explain the issues. The sonohysterogram will determine if that’s the case.

To give a  quick summary of how a saline sonohysterogram works, the goal is to get a good picture of the inside of the uterus. Despite all the medical diagrams that you see in school growing up, the uterus doesn’t actually have an open space in the middle during normal life. While there is space there, the tissue presses up against itself. Thus, to be able to see clearly, a small catheter is threaded through the cervix and the uterus is filled with sterile saline. Following that, an ultrasound is conducted. At my clinic I’ve been told that the sonographer will do about 30 minutes of prep work, then the doctor will come in to perform the ultrasound and remove anything she sees. I’m to take 800 mg of ibuprofen before the procedure and arrive with a full bladder. Sounds like fun, right?

The other thing I plan to cover during that appointment is a question about my luteal phase. Research indicates that most blastocysts implant between 7 and 9 DPO. Once implantation happens, hcg begins to be produced in detectible qualities, and that hcg helps to prevent your period from starting. Thus, it’s important that your period not start early (14 DPO is the norm). In my case, the few periods I’ve had recently have started on 10 DPO. My progesterone this cycle was 14 at 12 DPO, so perhaps it isn’t a problem, but I want to delve into it further after 3 losses, so I understand better what’s happening.