ERA: Baseline

This morning's appointment could have gone better.

Usually when you check in at a baseline appointment they like to verify that you've been financially cleared to start. For some reason, the FET code was put on my file: maybe there is no ERA code? Maybe to ensure that it's an identical protocol? I don't know. Maybe that ensures that bloodwork, ultrasounds, etc. are all following that protocol. If that's how they want to do it, fine. But the cost for a FET is much higher than that for an ERA biopsy and apparently no one mentioned the ERA to the front desk. So the front desk staff kept saying that since I'm there for an FET baseline I owe the entire amount for an FET. I was trying to explain to them that I'm not doing an actual transfer and that a transfer may not even happen for a few months.

They got the financial counselor involved and she was saying that she had emailed me the cost and the date it was due. First of all, no she didn't. All she emailed was the cost for each procedure without a due date, but since this isn't my first rodeo, I know the cost is due at baseline. Second of all, I'm not doing an FET! It was sorted out eventually but it was annoying to deal with, especially since the counselor didn't take me back to an office to discuss it, we were discussing it right up at the front desk. Luckily there weren't many patients at the time and the waiting room was empty, but still. I don't like this counselor. This isn't the first time she's messed with my account (I had an incident with her in February).

Once I was cleared to start, they took me back for blood and the tech couldn't get a draw. One stick - nothing. She went to the other arm, nothing. Second stick back on the first arm - nothing. I had water before coming in that morning but nothing else. She said I should go to the ultrasound first and then come back. I was getting worried because by now it was getting late and I had a 9AM meeting that I didn't want to be late for. I grabbed another cup of water on the way to the ultrasound hoping it might help things with bloodwork.

I went for the ultrasound and the doc came in pretty quickly, but she's like, "Ok so I see you're getting ready for a transfer!" And I had to correct her also - nope, just a biopsy. In the back of my mind I'm trying not to get nervous that not everyone is on the same page because I know they're not going to thaw any embryos by accident.... right? I hope not.

After that I went back to the lab for bloodwork and a different tech was able to get it with one stick. I was out about 5 minutes after that and due to light traffic made it to my meeting with time to spare, leaving enough time to text my husband the ridiculousness of the morning's adventures.

I got the results later this afternoon and we're good to start. I hope the rest of the cycle goes smoothly and is nothing like this morning's appointment.

Lose to win

I stepped on the scale this morning and didn't like what I saw. I was supposed to lose weight, not gain it! I had an eff-it attitude last week about diet and exercise and this is the result. I'm annoyed with myself because I knew it was happening and didn't do anything about it. I'm up four lbs from last time I weighed in. I could say it's water weight or some other excuse but I know I didn't work out last week and I didn't bother counting calories. Sometimes I think it's good to take a break from strictness, but ugh... hate these results.

I feel great and am happy with how I look so I can't use either one as a motivator to try and lose weight. I have a lot of self-confidence and never struggled with body image issues, but I know that to be healthy and carry healthy pregnancies I need to keep losing weight. So the struggle continues....

I thought about trying South Beach diet for a week just to shake things up, but it's very restrictive. I do better with limiting calories rather than limiting full food groups. I've had past success using myfitnesspal.com and counting calories. I think I just need to reintroduce soups and salads into our rotating menu which are filling and low-cal.

I want to get to a point where I'm eating normal and healthy without constantly thinking about weight, but I don't think that's an option. That's why people gain back all their weight: they stop thinking about it and stop actively maintaining which is how the weight creeps back plus more. Over the past three years I've lost 30 lbs. I've managed to keep most of it off, oscillating with the scale plus or minus 5 lbs every so often, but not ever getting past a certain point up or down. It's good and bad: I haven't lost any more but I also didn't gain it back so I consider it a win. I was hoping to lose another 10-15 lbs, especially before a next transfer. I don't know if the hormones are playing a factor in this, but I'm sure they're not helping matters. I know I retain weight when I'm on pills and I can only imagine what the shots are doing. It's not an excuse, but I try to keep realistic expectations.

I used to have a gym membership but I got rid of it in favor of working out at home and outdoors. In the past few weeks I've been debating whether it might be worth it to go back. While I prefer walking/jogging outside in the fresh air and not dealing with driving to a gym, I miss working out in air conditioning and the group fitness classes. The gym has membership dues and I don't know that I'll use it enough to justify the cost. Plus, I know that staying fit and active is important but to lose weight it's the eating habits that need immediate change.

So I don't yet have a plan and tomorrow is my baseline appointment for the ERA biopsy test. At times it feels like there's so much waiting time between appointments and procedures and yet every baseline appointment seems to sneak up on me. We're at this again? Already?

I think I will start by making a menu for the week. Planning is three-quarters of the battle and if I set myself up for success I'm a lot more likely to do well. I'll also plan to wake up half an hour earlier and get in a walk before the day starts. If I really want to lose weight before a transfer, I have to get serious about it and putting it in writing helps make me accountable. It's a start. 

Endometrial Receptivity Assay and Halacha

In prep for the ERA biopsy, we looked into whether this procedure would create an issue with regard to halacha.

Because of the nature of the procedure being time sensitive, it is by design scheduled during tahor days. Fertility treatment is already a game of "Red-Light, Green-Light, 1-2-3" with regard to niddah. Beside for the hormones messing with mind and body affecting interest, there's also the tangible issue of hormone-inducing spotting every so often. Taharat hamishpacha is a challenging mitzvah even in the best of times, and even more so when tahor weeks become shorter and shorter.

So I asked whether the procedure itself would render me niddah. Uterine bleeding will almost always result from an endometrial biopsy. Since this bleeding is caused by injury, the opinion of the posek on yoatzot.org, Ravi Henkin, is that it does not render a woman niddah. In addition, for all procedures that enter the uterus, the size of the instrument that enters is also relevant. As long as the catheter used for the endometrial biopsy is smaller than 19mm, the instruments entry into the uterus would not itself make one niddah.

I was told that the bleeding may go on for about a week, and for that time can be attributed to the procedure, but by that point I will have stopped all meds and will be expecting an actual period.

For anyone interested, this website is a great source of information. I love the Yoatzot.org website and appreciate that they are available to answer these questions.

Patience

Bloodwork from the RPL workup came back all within normal range. I would have been surprised if we got any other news since we never had any reason to believe otherwise. I'm still glad we did it now anyway and got a definite answer.

I also ordered meds and got the timeline for the ERA biopsy. Originally the first date they had open was mid-August. I have a patience problem as it is, but even more so having to wait so many weeks for a non-transfer, delaying a potential transfer even more. My nurse said she'll try for an earlier date if the schedule allows and an opening became available in early August so we got that date.

I'm trying not to stress about time. I know I have a patience problem and stressing about it doesn't help. I'm working on it. It's been a long year with a lot of treatment so what's another month for the ERA biopsy. I've gone back and forth regarding pros and cons so many times I've started second guessing its necessity.

The reason we're doing this test is to verify the "transfer window." There is a window between days 4 and 6 of your [medicated] cycle for an embryo to stick, so all transfers happen on day 5 per protocol. For some women, their body responds differently and their uterus is more receptive on another day. The ERA biopsy will give one of these results: receptive or non-receptive. If we get back a receptive answer, then we'll know that the protocol has the ideal time to transfer. If we get non-receptive, the results may point to a more optimum timetable and the doctor will repeat the cycle again based on the personalized window of time to implant. Supposedly you're supposed to repeat the test until you get a receptive answer. My doctor said that he's never had to do it more than twice on someone. The paperwork I've read on it has stats that show 74% of women get receptive the first time, and 26% get non-receptive with a recommendation for a suggested window. About 1% of women tested get back an answer saying non-receptive without any suggestion for a new window to try.

Either we find out I'm receptive on day 5 and we can transfer knowing it's the right day; or we find out that we've been transferring on the wrong day all along and hopefully get a new chance at success with a modified protocol more adapted to my body. My husband and I, as well as everyone we've discussed this with, all agree that it's worth going through this process to verify the transfer window. It's worth the time, the expense, and the delay for a chance at piece of mind.

Some days I don't know what's keeping me motivated. Some days I wish we can go back to "normal" life before treatment, or fast forward to post-treatment and on to the next stage of our life that includes kids. Sometimes being in treatment, and thinking about all the what-ifs and playing out all the scenarios and pros and cons of the next steps can be mentally exhausting. Even so, or maybe partially because of that, I am motivated and determined to do everything in our ability to make this happen. The rest is nature, luck, and maybe a little smile from Hashem.

Beach day

Late last week I found out that my office will be closed on Monday due to power-related repairs so my husband took off Monday too and we planned a short getaway. We chose Ocean City, MD because it has the beach, we were able to get accommodations at the last minute, and it's a fairly quick drive. 

We got home last night happy and slightly toasted. Even with waterproof SPF 50 sunscreen being reapplied nearly every hour, we still came home sporting some fierce burns. We had a large hotel room with a fridge and microwave, and a balcony with a direct view of the ocean. It was a great - so glad we were able to get away.

Sunrise in Ocean City, MD 

Mid-afternoon view from our balcony

View from my face ;)

Follow up appointment

We left the appointment today feeling good about next steps. What our RE lacks in phone/email skills he makes up for in person. We talked for almost an hour this morning and at no point did I feel like he was distracted or impatient. He answered all of our questions and then some. Even though we didn't walk away with a lot of new information, we have a clearer picture of our options moving forward. The discussion included:

• Natural vs. medicated FET 
• Endometrial Receptivity Assay (ERA) 
• Endo Scratch 
• Thyroid, prolactin, Vit D levels, etc. 
• Hysteroscopy 
• Transferring more than one embryo 
• Immunologic implantation dysfunction (IviG) 
• Additional embryo testing beside PGD 
• RPL workup 
• Getting a second opinion 
• His phone skills 

In a natural FET there are a lot less hormones but a lot more office visits because you have to be very closely monitored. The risk is that they do not do transfers on Saturdays or Sundays so if you happen to ovulate at a time when transfer would be one of those days then the transfer gets canceled. They don't do enough natural FETs to justify staffing everyone over the weekend and so there would be no one there to transfer.

The ERA biopsy protocol is similar to the FET. Birth control for a few weeks, followed by shots as a "pretend transfer." They mimic everything you do at a regular transfer then instead of transferring an embryo, they take a biopsy of your uterus and send it off for testing. They're testing to find out if the transfer window they use for you is in fact correct. If it is, test comes back normal and you can transfer next cycle. If not, repeat everything again for another cycle except delay biopsy for a day. The idea is to narrow down the most receptive time for your uterus to accept a transfer. I asked what happens if after the second time it doesn't come back normal? He said he would have to take it to the panel of doctors at the clinic since it hasn't happened yet. So at the very worst we'd be delaying by two/three cycles while we do this testing. It is also expensive and not covered by insurance ($850 each biopsy).

Endo scratch is where they irritate the lining of the uterus a week before transfer. The idea behind this is that the uterus starts to heal itself and makes it more receptive to an embryo. There isn't sufficient medical data backing this up. He offers it if we want to try it but says he's skeptical that it actually works. Even if a transfer works he says he can't necessarily attribute it to this. There are no known downsides to this - it doesn't delay a transfer and insurance covers it.

We reviewed all of my hormone levels and all are measuring normal with no changes from 6 months ago, when they were also checked.

I asked about his opinion on getting a hysteroscopy (sticking a camera into the uterus to take pictures) and his response was that the benefit was so small and the risk was so high that he doesn't recommend it. I have no symptoms to indicate that there's any issue; usually they recommend this for someone with unexplained bleeding. It's not worth doing this minor surgery where the risk of perforating the uterus or finding something that not actually an issue is much higher than the tiny chance of finding anything the HSG or transvaginal ultrasounds have been missing.

He says there is too much risk to advise transferring more than one embryo. There is a higher risk for premature birth, pregnancy complications, and possible stillbirth. The only pro is that it's better financially because you're saving one FET by putting two in there. He said that the embryo quality is high for both embryos and whether or not anything sticks has to do more with uterine receptivity than the number of embryos.

We briefly discussed IID with IviG therapy but it's so beyond anything I could need at this point that it was pretty much irrelevant. This is something that's offered to women who have gone through dozens of procedures with multiple losses.

There is no additional testing offered beside for PGD. If there is any chromosomal abnormality with the ones we're transferring (or with me or my husband), there has not yet been a test created to check it. We're literally doing everything we can to ensure healthy embryos.

As a way to make me feel like we're not leaving any stone unturned, he offered to do a RPL workup which is a blood test offered to women who have had recurrent pregnancy loss. This is generally only offered to people who have had multiple miscarriages before the 10 week mark and tests to find out if there are clotting issues which might interfere with the placenta growth. It's easily treated with baby asprin and lovonox but they need to know it's an issue in order to treat it. This isn't something he necessarily recommends to someone who has had "only" three failed FETs, but I appreciate that he brought it up and if it's just a simple blood test I'm happy to rule anything else out. Why wait for more losses if this is just a blood test and so easily treatable? Did that this afternoon and results should come in about a week.

He brought up getting a second opinion saying that if we want to see someone else that he doesn't hold anything against us or get offended. I'm not interested in starting over with someone new at this point, but I think it's good to hear he wouldn't take it personally if we did. I don't know that there's anyone better and at this point I think it's too soon to shop around.

He apologized for last week's hectic schedule which didn't allow him to speak longer. I told him that I completely understand I'm not his only patient but that when he does talk to me I'd prefer if he was in front of a chart instead of trying to wing it from memory. I wasn't trying to make him feel bad or get an apology - I honestly just want to be able to get accurate information when we talk. I feel better now that I brought it up. I think it was important to me to not let it go unmentioned because it was a big deal and I don't want a repeat.

Overall we're feeling good about next steps. My husband and I are on the same page about wanting to do the ERA test. We're not totally in agreement about the endo scratch. Even though the endo scratch sounds like something I would try, I think it's pointless if we don't narrow down the transfer window first. He thinks it's a waste of time regardless. If we do the test and it comes back normal, at least we'll know we tried and will have no regrets moving forward with another transfer regardless of the outcome. If it comes back not normal then we'll get a possible answer as to why things weren't sticking. Either way it sounds like it's worth the pain, expense, and delay of another transfer. We can't do both: it's either the ERA or the endo scratch. Once you do the ERA you're mimicking the transfer so you can't throw in a monkey wrench into the system by introducing something new at the actual transfer. Since the endo scratch is unproven and we don't get an any answers from trying it, we're going to try the ERA and see where it takes us. 

This means that we're not transferring anything in July, possibly not in August either. So if I have the time anyway, I'm going to make an effort to use the time wisely working out and losing weight. Even 5 or 10 lbs off will help me justify the delay for the next transfer. I know I don't need justification, but for an impatient person such as myself, it helps keep my mind focused by having a tangible goal within my control. Exercising helps me feel good and eating healthy can only help. I'm going to set a goal for 10 lbs and reevaluate if I reach it before it's time to transfer (that should be my biggest problem!).

Happy Birthday, America

Every year we do something for 4th of July, like a BBQ or a family gathering. In the past I've made the flag cake with the blueberries/strawberries/whip or a berry trifle. This year I didn't feel like it, even though there are so many fun things online to try.

This morning I made some pancakes and eggs and we had a great breakfast. The weather is rainy and gross so fireworks will likely be canceled. Ok with me. The failed FET, the constant terror attacks all over the world, the weather... just feeling bummed out. Maybe next year we'll be in more of a celebratory mood.

Symptom-wise things are back to normal. By that I mean that for the first time in a month there isn't any activity from my uterus; all is quiet and I'm back to how things were pre-cycle. Tomorrow morning is the appointment with the doc and my husband is going to take a few hours off work so we can go together. I asked for the soonest appointment available and that happens to be in another city. It's almost three times as far as the regular office we visit. We'll have to make sure to leave early enough to avoid traffic and have enough time to get there.

Overall the weekend was nice. One incident on shabbat stood out in my mind and really upset me. I was outside in the shul playground pushing my 2-year-old niece on the swings. Services were almost over and they were setting up the kiddush outside. There were a bunch of mommies and kids all over the playground. There was a baby (non-walking, maybe a year old?) in the path underneath the swing we were using, eating the wood chips from the playground floor, that I wanted to move for his safety. I asked around the mommies if they know whose baby it is and no one knew. I went to move the baby anyway if only to get him to stop eating wood chips. As I was moving him away from the wood chip area to the grass I kept asking people as I passed them if they knew whose baby it is. No one seemed to know who left their baby unattended under the swings to eat wood chips. Not wanting to leave my own charge unattended, I kept asking people as they came by and one guy responded, "Oh yeah, he's mine. I forgot about him!" and with a light chuckle took the baby. I don't think he was kidding. Asshole. It made me so upset that this guy has so many children that he can't keep track of and we weren't even able to even get to 5 weeks of pregnancy.

There's no way to compare, I know. There's probably a reason for His plan even if I'm not privy to the details. I don't know why we've been challenged with this, and I don't want it to make me bitter. Yet seeing this guy being so cavalier about this baby really rubbed me the wrong way.

Tonight I found out about another pop. Someone very close to me who has been trying naturally since the fall, and suffered one chemical pregnancy herself, is expecting. Had FET #3 worked, we would be due within a week of each other. She knew a few weeks ago but held back from sharing the news because mine didn't take. I'm so happy for her. I'm so glad she did tell me, and I'm grateful she was sensitive enough not to tell me right away when she found out, which was when I found out that my pregnancy failed.  The announcement did make me cry. It was a cry of sadness that our babies won't be the same age rather than jealousy or resentment. It was a cry of heartache that she felt the need to hold back with the happiest news of her life because the crappy news of my failed pregnancy overshadowed yet something else. It was a cry of grief for what we lost. It was a cry of despair of the challenges ahead and the lack of any guarantees.

I want to keep hope alive. I want to believe that at least one of the embryos we have in the freezer will become our child. I want to stay strong and keep trying. But it's hard to be brave when the emotional wounds of the last failed cycle are still so fresh. No one has the magic formula. No one can tell me the future. No one can be strong for us. We need to keep feeding the faith, keep hope alive, keep thinking positively, keep believing that one day it may be us. IYH soon by us.