More on 6.1

I had my WTF phone call about our failed DEIVF. No surprises - perfect embryo, great lining, he's surprised it didn't work. Yeah, me too...

He suggested re-running my immunology bloodwork to see where it is before doing the first FET. So I'll go in on Wednesday morning, which will get us results by the end of the week.

I've been using OPKs, but no surge yet (today is CD17). If no surge by Wednesday, I go in for an ultrasound and hormone bloodwork on Thursday to figure out if there's any follicular activity, or if it's an anovulatory cycle and we wait until January and hope for an ovulatory one.

I hadn't realized, but the FET will be a week after a surge. They want 6 days of progesterone in my body before transferring the embryo, since it was frozen at Day 5.

Today I also sent in the contacts and checks for another retrieval with our donor. Hopefully all the embryos we get will just be frozen as backups (after CGH testing), since we'll have two opportunities to transfer before then...

I haven't been feeling festive, but I'm not particularly down, either. This month could be a hard one - last year, the due date for our first pregnancy was in early December, but we were pregnant with our second pregnancy at the time. And then miscarried a week before Christmas. It all feels so far away.

I decorated my Christmas tree yesterday, which definitely perked up my holiday spirits. And I have my holiday music playlist on my iPods now.

Of course the irony of 6.1 is that if I *do* surge this week, transfer will be the end of next week, which means bedrest right before or on Christmas. And we're hosting Christmas Day for about 15 people...

6.1

I paid for our natural frozen embryo transfer today.

More to come soon.

Rinse, repeat

And so we pick ourselves up again.

Thank you for all the love and kind thoughts, both here and on twitter.

Emailed with my RE. We can do a natural FET immediately. Meaning we wait for AF, and then I use OPKs to watch for my surge, and then I go in for bloodwork and an ultrasound to confirm things look ok for transfer.

Of course, my body will have to cooperate and ovulate, which it normally does (ovulates, not cooperates, obviously). Sometimes after my previous IVFs, I've had a wonky cycle that may have been anovulatory (we think this happened in in March), but I'm hoping that it was caused by stims.

My last progesterone was Saturday night, so hopefully AF will have started by the end of Thanksgiving weekend. I usually (ha!) don't ovulate until CD17-20, which would put us around December 14-17.

So amazingly, it's not impossible that we could do another transfer before Christmas.

Cruel

It's so cruel that progesterone side effects mimic pregnancy symptoms. Even knowing that, it's hard not to be hopeful after twinges, sleepiness, queasiness in the morning...

Beta was negative.

The Hamster Wheel

Tomorrow is my beta.

It's hard to imagine it being positive. And I say that with full ownership of the fact that I've felt symptoms that could be pregnancy symptoms all week: twinges, exhausted in the afternoons, queasy this morning...

It's hard to imagine that after 4.5 years of TTC, we could be close to getting off this hamster wheel.

You know what that's like. Rinse, repeat. You do your shots, go in for your monitoring appointments, do the bloodwork, go through retrieval (or IUI), go through transfer, deal with suppositories. And then have to start all over again, due to bad luck (cancelled cycle), bad luck (BFN), or bad luck (miscarriage). Back at square one.

The first time we got pregnant, we thought we were there. I was a little cautious, because I'd joined twitter and the blog world when I started IVF1, and I'd heard a lot of sad stories in my brief time in the online TTC community. But then we had a good ultrasound at 6.5 weeks and saw a heartbeat. And then at 9 weeks there was no heartbeat and our world (and our optimism) came crashing down.

Pregnancy #2, we were much more guarded. Pleased, certainly, to have made that milestone, but we were oh so aware that it was just a milestone and not the goal. And then at our 6.5 week ultrasound the heartbeat was just a little slow. And at our 7.5 week ultrasound it had slowed to 50, and at 8 weeks it was gone.

IVF4, knowing our two miscarriages were due chromosomal abnormalities, we transferred a (FISH-normal) embryo, and got a BFN. We managed to make it all the way through the various hurdles, and then the embryo didn't take. (Of course now we know it had a 40-50% chance of still being abnormal...)

IVF5, we switched doctors so we could try a new protocol. Dismal failure - no embryos made it to testing.

After so much bad news, it's hard to be hopeful that this time is going to be THE time. It's hard to imagine  that we might be able to step off the hamster wheel.

Logically, we have made changes that make a difference - mostly using a donor so we could get a genetically and physically perfect embryo to transfer. But is it enough? It's still rolling the dice.

I will be disappointed if it's a BFN tomorrow, but I won't be surprised.

Roulette, anyone?

The genesis for this post came from my thinking about our recent DE cycle, and our decision to do another cycle immediately with the same donor so we have a better chance of having multiple children who are all full genetic siblings.

I've been wanting to do a post for awhile on the financial side of infertility. Occasionally I see bloggers post a total of their IF-related costs, but it's rare as a stand-alone topic and rarely as detailed as I think a post needs to be to be helpful.

Let me start with how lucky my husband and I are that we can afford to pay for treatment. I know that, and I know this post may rub some people the wrong way. Despite the fact that the costs are breathtaking, we've never had to consider forgoing treatment because of the price. And after all, what would we be more willing to spend money on...

It breaks my heart when I read bloggers talk about how they can't afford the next step, or when they consider using all their savings for one try. It's awful that those of us dealing with IF can't rely on insurance coverage, and that even when we have insurance coverage, it's almost always paltry compared to the costs involved, or doesn't cover IVF.

Onward to actual numbers...

Our donor cycle cost about $45,000. That's $25,000 for the IVF cycle (her costs/meds + my costs, including CGH), $2,500 for my meds, $13,850 for the donor (her fee + agency fee + escrow fee), and about $4,500 for her travel costs. (We didn't get to take advantage of a shared risk cycle because I'm recommended to transfer one embryo at a time due to the DQ Alpha partial match.)

A repeat cycle is going to cost less, because we will only pay for her IVF cycle and then the testing/freezing of the embryos, but the donor fees and travel costs will be pretty similar (agency fee drops a bit, donor fee goes up a bit). My guess is ~$37,000-$38,000.

This first donor cycle produced 3 perfect embryos. $15,000 each. Isn't that nuts? It's like walking into a casino and putting a giant stack of bills on red on the roulette wheel.

Since the beginning of 2010, we've spent about $140,000 on infertility treatments across our 5 IVFs with my eggs and the 1 DEIVF. Prior to that, we spent 2 years doing IUIs. I had some med coverage through insurance at the time ($5,000 lifetime max), but it ran out during our last IUI with injectables.

When we were looking into gestational surrogacy, after learning about our DQ Alpha partial match, I found out that it costs about $100,000 to engage a surrogate. About $25,000 goes to the surrogate, $20,000 goes to the agency, $25,000 pays for the insurance for the surrogate, and the rest covers expenses. Crazy.

It's unfair that some of us have to spend thousands, tens of thousands, or hundreds of thousands of dollars to have the children we want.  IF is unfair.

I don't know what the answers are.

What CGH results look like

(Edit: Added PGD results to the bottom of this post.)

I thought some people might be curious about what sort of information you get when you have your embryos tested with CGH, so I scanned in my reports.

Here's the report from the lab that did the CGH (click the image to zoom in).

The embryos are numbered down the left, 1-12, the second column notes how many cells were tested (1 each, in our case), and then there are 22 columns for the 22 chromosomes, and another column for the sex. Then a summary of the data - if everything is a 2, and the sex chromosome is normal, then the embryo is declared normal.

It's noteworthy that every embryo was declared either normal or abnormal. It is possible to get "no result", because the biopsied cell fails to grow and thus there's not enough DNA to get test results. That's one downside of CGH, although we were completely ok with it - worst case we would have thrown out the known abnormals, transferred the known normals one at a time, and then moved on to the unknowns if necessary.

---

Here's the report from my clinic that tabulates the CGH data (diagnosis column) with the physical grade at Day 3 and Day 5.

You can see that egg #1 produced a genetically normal embryo, but it fragmented by Day 5 and wasn't looking great at Day 3 (grade III).

Embryos #4, #7, and #8 are our good ones. They're genetically normal, and they are Grade 1 expanded blastocysts. We transferred #8, which was as good as embryo as you can get (5AA). Those following along closely can figure out what gender we transferred... #4 and #7 are frozen for future transfers - they're both graded 5AB which is only slightly below a 5AA, still awesome embryos.

We really lucked out that we had 3 genetically normal and physically perfect embryos. They don't always line up so nicely. (see egg #1)

#5 was the laggard that we were hoping would keep growing. It was genetically normal, but was 9-cells at Day 5 and needed to reach blastocyst stage by Day 6 to be frozen. Alas it stopped growing (or didn't grow fast enough).

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For comparison, here's the FISH report that we got on IVF4 earlier this year. My clinic used to only offer FISH (tests 9 chromosomes), but recently started working with another lab to offer CGH for patients who want/need it.

You can see that the report is much less complete - only certain chromosomes are tested (including sex). It also turns out that the FISH report is less reliable - it's possible for a normal pair of chromosomes to be situated so that the lab analyst can't tell if there's one or two. So there's about a 5% chance that an embryo showing one monosomy is actually normal. However, with FISH, unless the sample is degraded for some weird reason, you'll always get a result, so you don't risk the 'no result' that is possible with CGH.

---

And here's the egg report from that cycle.

Slightly more information than for our recent cycle - the embryos were graded at Day 2. You can see that the best looking embryo at Day 3 (#2 with a Grade 1) was not normal. And by Day 5, our "normal" embryo had only reached early blastocyst stage.

Dr. Sher has an interesting blog about CGH compared to FISH. (Note that SIRM does a different type of CGH that requires that the embryos be frozen since it takes a few weeks for the analysis to come back.) Since FISH only looks at a subset of chromosomes, a "normal" FISH embryo is actually abnormal 40-50% of the time.  I found that out only after our failed IVF4, and it's likely the reason that IVF didn't work - that the 'normal' embryo we transferred wasn't actually normal.

It's infuriating, actually, since the cost for the two types of genetic analysis are comparable, and one only identifies about half of the abnormal embryos. It's still better than nothing, so if it's all your clinic offers, you may still want to do it, but it's why I insisted that my local RE do CGH on our donor egg-derived embryos.

Hopefully this is helpful and of interest. I know I would have loved to have seen what a CGH report looks like before I actually had one run on my own embryos. If you have other questions, leave them in the comments and I'll continue to flesh out this post if I have the answers.

Planning ahead

Our fourth embryo didn't make it, so we have 2 genetically perfect frosties, both 5AB.

With 3 embryos from this cycle, we're reasonably optimistic we'll be able to have one kid, but it's unlikely we'd get lucky and have 2.

So yesterday I reached out to our donor egg agency and asked them to contact our donor to see if she'll donate for us again.

Despite the breathtaking cost (post to come soon about the financial side of IVF...), given we want more than one kid - meaning we'd need to do another donor cycle eventually - and given we'd like for our kids to be full genetic siblings, there's no better time to ask her to do another cycle for us.

And she said yes.

We're figuring out exact fees with the agency. Her fees go up since she's a repeat donor, but obviously there are a lot of agency costs that won't recur: genetic consult, therapist consult, and medical screening (and related trip up here) with the clinic. We should also be able to minimize legal costs since we can either duplicate our first contract, or simply add an addendum that the second cycle follows the same rules as the first cycle.

She'll need about 3 months in between, so the cycle would be February-ish, and then we'll test and freeze the embryos.

I've been low key at home since transfer. Suppositories started last night - joy! - and I found out on Thursday that I keep with the 2x weekly estradiol valerate shots through the first trimester. Since this is my first transfer without having a retrieval (not sure what to call it - it's like prepping for a FET, but it wasn't frozen), I hadn't realized that would be necessary. Those shots use the 22g needle and are a lot less pleasant than the progesterone in ethyl oleate shots which use a 25g needle that I barely feel. Ah well, at least it's only 2x weekly.

Fast forward to transfer

So I left you all with the news that we had 12 eggs fertilize normally. That was Sunday.

We found out on Tuesday night (Day 3) that all 12 made it to biopsy, which was great news!

The CGH results didn't arrive until this morning at 9am so our transfer appt was moved to 10am for the consult, with transfer right after.

5 of the 12 embryos are genetically normal. Of those 5, 1 is a fragmented blast and will be discarded. 1 is a 9-cell embryo that's still growing. And 3 are grade 1 blasts (5AA, 5AB, 5AB). Two XY and 1 XX, and the still-growing embryo is XX.

We transferred the 5AA perfect embryo today and froze the other two. Transfer was easy but I overcompensated for my not-full-enough bladder last time and had a super full bladder - ugh! At least my clinic lets me pee right after transfer.

Did my Intralipid infusion after and then came home to rest on the couch.

Beta in 10 days, on November 20. And we'll know tomorrow if #4 made it to blast and can be frozen. I'm hoping we get that 4th - 3 makes me nervous and the chances of getting two kids out of 3 embryos is slim. We may ask our donor to consider doing another cycle for us...

Less wow

Still good, but not the fabulous update we hoped to get.

Of the 30 eggs, 16 were mature and 12 fertilized normally. None matured overnight, so we're on for a Thursday transfer.

12 is good - we know that the ones that don't progress to Day 3 are abnormal, so we're hoping of the ones that do make it, we end up with a handful of genetically normal ones so we have a few chances at transferring them.

Started Lovenox last night, and progesterone. All done with Lupron, at least. :)

Wow

So in my last post I mentioned we were tracking 18 follicles for our donor.

Two days later that was updated to 19.

Two days later than was updated to 20.

Today, when we arrived at the clinic for our monitoring appointment, we ran into our RE, who had just done the retrieval for our donor. He hugged us (we haven't seen him since April), and said "We got way more than 20."

Twenty minutes later, when he came into the exam room for my ultrasound, he told us they'd confirmed they got 30 eggs.

30!

I can't imagine what it feels like to have 30 follicles in there - I felt bloated with <10.

It's likely that a higher proportion of the extra 10 are immature, so we'll see how many mature overnight. If it's three or more, we'll plan to do a Day 6 transfer. The regular embryos will get biopsied on their Day 3, which will be Tuesday, the overnight-matured embryos will get biopsied on their Day 3, which will be Wednesday, and then we'd have CGH results back for a Friday transfer.

I'm not counting my chickens, since there are a lot of steps to go, but it's the best possible news we could have gotten today.

We also learned that our RE loves our donor. He sees a strong physical resemblance, and thinks she's smart and lovely. She's apparently feeling good (the clinic uses a Lupron trigger to help avoid OHSS), and has been easy for them to work with.

My monitoring went well - lining is good, and my estradiol is where it should be. I did an Intralipid infusion today as my TNF levels are still elevated despite the Humira (mid 30s for those of you who know what to look for), and will do another with transfer.

#hope

Math

I got an email yesterday with a report on our donor's first monitoring appointment.

They're tracking 18 follicles between 9-11mm.

I've never had more than 10 to track, and I've never had more than 2-3 within a 2 mm range.

So it feels like a great number.

I just know how the math goes... How many have mature eggs, how many fertilize, how many get to Day 3, how many get to Day 5, how many are genetically normal...

But it's great news at this point, and all I can do is take it one day at a time.

P.S. I had a big blood draw this morning to check my hormone levels and my immunology activity. Hormone results will be back today, immunology later in the week - that will determine if I need an Intralipid infusion before next week's transfer.

And we're off...!

I visited my clinic this morning for bloodwork (and to drop off another full biohazard container...) My donor visited a local clinic for her blooddraw. Both our estradiols came back satisfying low (mine was 7), so she starts her meds tomorrow and will fly up here to the clinic on Sunday for the beginning of her monitoring!

I start my daily dexamethasone tomorrow, start a 5 day course of cipro, and start twice weekly estradiol valerate injections. Then I go back in next Monday for more bloodwork, including immunology this time to see if I need an Intralipid prior to transfer. Starting next Sunday I'll get regular updates on how our donor is doing.

Happy to finally be at the starting gates!

In other strange musings, I was looking at our (somewhat bedraggled) tomato plants this week and thinking about donor eggs. Some people grow their tomato plants from seeds, but we buy seedlings from a great organic farm. I do a good job prepping the soil, and making sure they have a good environment to grow. And we've had great success this year with our tomatoes. (Giving up on large tomatoes helped - we get coastal air that keeps it cool in the mornings and evenings. :)

Donor eggs is kinda like that - we're getting a seedling, but the growing and nurturing of it are our responsibility, and the health and success of the plant is our doing.

Like I said, strange musings...

Living the Lupron Life

So I started my Lupron injections on Sunday. Three days in, and the irritability hasn't hit yet (my husband is thankful!) I'm sleepier in the mornings, which I'm pretty sure is related. My last birth control pill will be Thursday morning, and then I have bloodwork next Monday.

The donor is also having bloodwork on Monday and if it shows that everything is quiet, she'll start stims on Tuesday. Really looking forward to getting updates on her progress.

I've been sluggish. Not feeling productive, even though I've taken on a few volunteer projects. Including volunteering for the first time as a clinic escort for Planned Parenthood! I'm looking forward to doing that once a week.

The puppy is much better behaved - she knows how to signal she needs to go outside, which was an enormous breakthrough. Even though she's fine on her own for a few hours, I do feel she's cramping my style - there are things I'd be doing if I didn't feel tied to home because of her. But I do get a lot more exercise walking her, and she's cute and generally fun to be around.

The #truthabouttrying tweets today were great, but reflecting on my summary: 6 IUIs, 5 IVFs, in progress DEIVF, I mostly feel tired. Nothing to show after more than four years... Here's hoping this round does the trick.

Scattered post, I know. I'm looking forward to having meatier updates soon!

Calendar!

Our donor is finally cleared medically, and so I now have a calendar for our cycle!

It's pushed back a week from what our clinic initially proposed, due to the donor's schedule, but I guess that's par for the course when you're coordinating 3 schedules, not 2.

I take Humira today and two weeks from today (side rant: my husband's company's insurance sucks - I have to pay for the Humira out of pocket = $2000), and start Lupron on October 16th (ugh!) Estradiol valerate injections start October 24, and I have a monitoring appointment on November 5. Retrieval is likely between November 3-6, making transfer between November 8-11.

So ready to get this show on the road!

In answer to a few of the questions on my last post:

@Lindsey: we're working with our local RE - there's no advantage for us working with Dr Sher for a donor cycle, as my local RE has successfully managed my immunology issues in the past.
@Roccie: we have no agreements in place, but can contact her through the agency. She's open to the possibility of contact with children, but doesn't want to stay in touch with us in the meantime.
@Amanda: we had to meet her because she was born abroad, which means the FDA requires the donation be an open donation (in case of weird diseases, etc.) Most donations are anonymous. :)

Meeting

We met our donor today.

I don't think I've mentioned here that this would be part of our process. The FDA requires donations to be open donations in certain situations; in our case it's because our donor was born abroad.

We wouldn't have chosen an open donation, and it turns out the donor wouldn't have either, but we were all willing.

I'm glad I met her.

She looks like she could be my sister. We have very similar coloring and build. She's prettier than in her (pretty) profile photos.

She was quite reserved. It's clear that while her desire to donate comes from a charitable place, the relationship is a transactional one. But there were a few moments where she became more energetic -- all around things (likes/dislikes, personality traits) that we have in common. She didn't have any questions for us, we had a few for her. And I told her a few anecdotes about us, and about IVF, which hopefully were helpful.

It's funny, beforehand I wouldn't have said I wanted any sort of ongoing relationship, but having met her I would have been willing to do that if she had wanted it. Which she doesn't. I'm fine with that, it was just interesting to find her an appealing person.

As the therapist who did our psych consult pointed out, it will be a better story for our child(ren) that we've met our donor. And it was hugely reassuring to feel like she was well represented on paper, since there's an enormous leap of faith you take when making a decision based on an entry in a donor database.

This afternoon she has her medical screening appointment, and it'll take up to 2-3 weeks for all the bloodwork to come back. In the meantime, assuming her ultrasound looks good, she'll go on birth control so we sync up cycle-wise, and then hopefully in late September she'll start stims.

In case anyone is facing a similar requirement, the agency required a 3rd party to be present, so the woman who handled our donor contract facilitated, which mostly meant sitting in the room and occasionally asking curious questions.

One more hurdle overcome!

Waiting

It's been awhile since I've blogged, so I figure I'm overdue for an update.

Our donor's genetic consult and psych consult are complete, as is our psych consult. We're now waiting for her medical screening appointment to be scheduled - the nurse guessed it'll be the first week of September. Shocking that September is so close - it sounds so far away but when I look at a calendar, it's right around the corner.

We have a few infectious diseases to get re-tested for (thanks, FDA), and I have to get my immunology bloodwork redone to see how it's looking, but otherwise are on hold.

Checks have been sent for all the donor payments, and I've had the financial consult for the IVF cycle. Due to the DQ Alpha partial match, we'll be transferring one embryo at a time. Annoyingly, that means we aren't eligible for the shared risk plan at our clinic. We meet every other criteria, but the "following doctor's recommendations, including transferring two embryos at a time". It's extra annoying, because it's in everyone's interest that I transfer one at a time.

With a partial match, 75% of 2-embryo transfers will result in at least one match, which means my immune system will flare up and reject the embryos. And in a shared risk plan, I'd get 90% of my money back if I didn't end up pregnant at the end of all the transfers.

With a single embryo transfer, only 50% of my transfers will result in a match. So I feel like I'm being punished for having this extra information, which in fact helps everyone be successful. Grr.

I'm still waiting for AF. CD 42... I think it's a reflection of the state of my ovaries, honestly. Good thing we decided to move on...

Once the donor passes her medical screening, we'll both go on the pill for a few weeks and then start stims. Depending on immunology, I may do Humira shots again in September.

My nurse's best guess is that we'll do a retrieval around mid-October. I just want to get started so I know we're on a path.

My puppy is keeping me busy. We started puppy class and took her to a puppy social today which was really fun. I'm still a little dubious about the whole puppy thing - she's so much work. I'm looking forward to being past the puppy days but wish she'd stay this size.

Sending loving thoughts to C who's dealing with a BFN from her FET.

Progress

We found and confirmed a donor! She still has to pass a psychological screenings and then a medical screening by our doctor, but we're excited to be making progress.

We found four donors we were excited about - three with one agency - but one was in cycle, one was just about to be confirmed by another couple, and one won't travel from Southern California. Hopefully it's fate. :)

I've had a few tears about DE, but a lot of my unhappiness is assuaged by finding a donor I am (and we are) enthusiastic about.

I don't know yet what cycle timing will be, but it's top of mind for both of us.

Well, not entirely top of mind. Because two days ago we picked up a golden retriever puppy and she's been consuming our attention (and sleep cycles...) The first day was really overwhelming, and I was unexpectedly really sad - I think because I never thought I'd be at home with a puppy before I was home with a baby.



In other IF-related news, I met DeadCowGirl last week and had a fabulous time. I see doggy playdates in our future. I've really enjoyed meeting all the twitter/blog women I've met in real life - very worthwhile.

Decision made

We're done trying to use my eggs.

I just can't fathom going through the same motions, hoping for a different result. At about $13k a pop (drugs + retrieval + travel). And even with "better" results, the chance we'd end up with one good embryo at the end of the year is very slim. (1 out of 4 embryos, or 1 out of 3 blasts, are genetically normal at my age, so our odds are not good when we typically get 1-3 eggs per retrieval...) And if we get to the end of the year and have no good embryos, then we'd be 6 months behind in starting the donor egg path. We've been at this 4 years this month, and we are past ready to have kids.

I'm disappointed, of course,, but I've known this was likely for quite a while. I was really sad on Sunday night about losing my genetic contribution, but finding profiles I'm excited about goes a long way to reassure me.

I now have database access with all the egg donor agencies recommended by my last two clinics and spent some time over the past few days pulling profiles that looked interesting. Some even capture the things I feel I bring to the table genetically.

This weekend, my husband and I will go through the profiles I've collected and figure out which ones appeal to both of us.

For those interested, the things I'm looking for, in priority order, are:

1) Intelligence/academic performance
2) Interest/talent in the arts, preferably music
3) Attractive (totally subjective - my husband and I don't always agree!)
4) Brown hair
5) Looks like she could be related to me
6) 5'5"+

I know it takes awhile to process a donor, even after we choose one, so my guess is we'd be cycling in early October? Roccie? Lisa? What's your experience? We're obviously keen on getting started as fast as possible.

In other news, I had a great time meeting Jamie on Tuesday. We went to the Jelly Belly factory in Fairfield - it's in between where we live, so made for a fun place to meet up.

Zero

Those of you who follow me on twitter already know that yesterday we were told our lone embryo had failed to develop into a blastocyst.

Grr.

Not surprising, knowing the statistics on how these things work, but certainly disappointing.

And it's making us think very very seriously about stopping any attempt to use my eggs and just go straight to a donor.

We can get our money back for the unused embryo banking cycles and if we choose, apply it to a donor cycle (or get a refund and work with a local clinic for the donor cycle so I don't have to travel).

I'm leaning that way right now, and my husband is comfortable with whatever I decide (although we had an emotional chat last night that showed how frustrated and impatient he is with the journey; as am I!) I mean, we can get $10,000 back from our current plan, and avoid spending $10-$15k on meds for the two cycles. That $20-$25k goes a long way to paying for a donor cycle (likely $30-40k depending on the donor fee.)

If we decide to start the donor process, we would move as quickly as possible, so hopefully cycle in September or October. I'd love to hear agency recommendations from anyone on the West Coast - we'd either be cycling in the Bay Area or in Vegas.

ps: my Vegas post got to #14 on Google for a search on "vegas ivf", although it's currently at #16 and will likely sink from there. Hee! Thanks for all the nice comments on it - I'm glad it's helpful for folks.

What to do in Vegas in between IVF appointments

I just spent 9 days (2 + 7) in Las Vegas while undergoing IVF 5.1. I'll be back in August for 5.2, and October for 5.3. Previously, I'd only been to Vegas to go to the Strip, and had never explored the city or the area.

Since I'm not the only person who goes to Las Vegas for IVF treatment, I thought I'd document some of the fun things I found to fill up my days while I was there. After all, a wandy appointment only takes about 30-45 minutes including bloodwork, so there's a lot of time to fill...

I also want to call out a few tweeps and bloggers who helped me with recommendations and meetups and even meds! Ana kindly drove in and met me at my hotel for coffee and great conversation. Stephanie shared some meds she no longer needs. Asano gave me tips on hikes, while I'll investigate when I'm there in October -- it's just too hot in June/August for that sort of exercise!

Daytrips:

Primm Fashion Outlets -- There are two outlet malls in Las Vegas, but I'd skip them in favor of a daytrip down to Primm, which is right on the border with California. It's about a 30 minute drive from the Strip. The mall itself is kinda scuzzy, but there are great outlets, including a Williams-Sonoma outlet and a Neiman Marcus outlet! (Very dangerous...) The outlets in Las Vegas proper have good stores, too, but not the two I listed. Of the two, the one at the north end of the Strip seems to have a better store selection.



Hoover Dam -- I'd never been, so I figured it would be a good excursion for one of the days with no appointments (since you want to get there early to beat the crowds and the heat). I showed up around 10am and was able to get the last ticket for the 11am long tour (one of the benefits of being solo!) It's an interesting tour, and I found the trip to be worthwhile. It is extremely hot, so plan accordingly. Only takes about 40 minutes to drive there from the Strip.

Restaurants:

Burger Bar @ Mandalay Bay (actually Mandalay Place) -- Great burgers, and accommodated my no-bun request (however, they aren't sophisticated enough about gluten-free to offer lettuce-wrapping as an alternative). There was a long wait for a table when I arrived around 1:30, but I was able to sit immediately the bar (another advantage to being solo). I had the Kobe burger and it was very tasty.

Lotus of Siam -- This Thai restaurant is reputed to be the best in the country, and it was amazingly good. We ordered all unfamiliar dishes (apart from mango with sticky rice) and enjoyed them all. It's in a little strip mall (heck, most of Vegas off the Strip is in a little strip mall), northeast of the Strip.

Julian Serrano @ Aria -- I loved this tapas restaurant. They have a special menu that lists which allergens are in which dishes, very helpful for avoiding gluten (though I was very surprised at some of the dishes they claimed had gluten - roasted marcona almonds?), and very very tasty food. This was another restaurant that couldn't seat me at a table but I was able to sit at the bar and order immediately (ended up ordering with two ladies who sat down at the same time, which worked out great as we could try more dishes!) The Huevos Estrellados were my favorite dish - very simple and very tasty. THe sauteed padron peppers were also great. I will definitely go back here next visit.

Lazy Joe's Fish & Chips -- Not in the same league as the others, but I want to call it out because it's the first fish & chips place that's also gluten-free! I was even able to order onion rings safely. It's good food, but since everything is fried, it's pretty heavy. Fun as an indulgence - I'll likely go back for fried chicken since I haven't had that in 3 years. It's not far from Dr. Sh.er's office.

Sammy's Wood-fired Pizza -- Another restaurant I visited specifically because of their gluten-free options; in this case, gluten-free pizza. I like their (new) gluten-free crust, but they seem to have trouble sufficiently cooking/heating the toppings without overcooking the crust. My crust was great, but the toppings were a little cool (I like my pizza cheese browned). The entire staff at the restaurant was very interested to hear how I liked their crust (I guess they changed providers recently, and the new crust is very different from their old crust) - I appreciated their interest and their friendliness. I went to the location in Henderson, before I went to Hobby Lobby (see below), but there are a bunch of locations in Vegas.

Other food-related places to visit:

Top Notch BBQ -- Reputed to be the best BBQ in Las Vegas, Top Notch operates out of a food truck parked at Plant World on W Charleston. Check twitter for the latest, but I believe they are there every afternoon from 12-6 except for Sundays. I picked up a ribs and pulled pork combo dinner that came with two sides and a slice of Texas Toast (which I skipped), and it was enough for two meals. And super yummy!

SnowONO Shave Ice -- My favorite thing about going to Hawaii is getting a shave ice every day (or more than once a day...) Oddly, I haven't had any luck finding shave ice in the Bay Area, so I delighted to find the SnowONO Shave Ice truck in Vegas. Check twitter for schedule and locations - I ended up visiting them at the fresh52 farmers' market.

Farmers' Markets:

Saturday and Sunday mornings are the fresh52 markets (different location each day). I went to the Sunday morning market (to get my shave ice from SnowONO) and bought some product and a yummy, wheat-free oatmeal/peanut butter/chocolate cookie from The Land of Sweets.

Tuesday and Wednesday late afternoons are the Las Vegas Farmers' Markets, also different location each of those days.

The markets all tend to be on the outskirts of town, so you'll have to figure out which is most convenient for you. I didn't mind driving around, since I wasn't really on a schedule for most of the visit.

Specialty shopping:

Scrappin' Time -- this is a scrapbooking store. I don't actually scrapbook, but I do various crafty things and often enjoy browsing. This one is extremely focused on scrapbooking, so if that's your thing, you'll love it.

Hobby Lobby -- it's a giant store in the vein of Michaels or Joanne Fabrics. They have a large scrapbooking/card making area and I found a ton of really cool crafty stuff.

Groceries:

I'd recommend buying groceries after you see your hotel room, so you have an idea of what sorts of things will be easy to prepare. (e.g. do you have a pot big enough to be a pasta pot? how about a skillet to fry eggs?)

We went to the Whole Foods at Town Square after arriving in Las Vegas. I can't recommend it - it's the worst Whole Foods I've ever visited. Looks picked over, and the produce is poor quality. The only good thing is that it's close to the airport and the Strip. Next time I think I'll drive to the one in Henderson.

fresh&easy is now in Las Vegas, and would be a good complement to Whole Foods for the basics.

Places to stay:

The two places I've tried so far are the Wyndham Grand Desert and the Signature at MGM Grand. I much preferred the latter, although it's slightly more expensive.

The Wyndham is a timeshare condo hotel. The kitchen in the 1 bedroom condo I stayed in was totally adequate, and reasonably stocked with pots/pans/dishes. The condo itself was adequate - nothing special. Not particularly inspiring for a week's stay. If you call down to the front desk you can get the wifi access password, but the service is pretty spotty. DVD player in the room and HBO. There are multiple pools on the property, some are adult-only, which is nice. It's all self-parking, and on weekends it can be very difficult to find a spot in the evenings - I think the place gets overbooked for the number of parking spots. It's two long blocks off the Strip, and there's also a shuttle that takes you to the Strip (I never used it).

The Signature at MGM Grand is much more stylish. The mini-kitchen in the junior suite isn't quite as functional as at the Wyndham, but it's still fine for cooking simple meals. It's also not as well stocked with pots and pans and stuff. (Although I will note that I booked through a third-party instead of through the hotel, so it's possible the "official" rooms differ.) Parking is all valet (unless you want to park way over at the MGM Grand's self-parking, which I wouldn't recommend). Free, but I tipped $2 every time I picked up my car - usually took 5 minutes to get my car. The pool's (one per tower) are small, and aren't open every day, which is weird. But you can use the MGM Grand's pool if you're into that more social/party pool scene. And Wet Republic is right behind Tower 1 (with associated loud music until 7pm on the nights it's open). There's a resort fee which gives you wireless access - I found the service to be good, although not super speedy. Certainly adequate for checking email and stuff like that. There's an indoor hallway that takes you to the MGM Grand where you can get out to the Strip. It's maybe a 10 minute walk from Tower 1 to the Strip through the hotel.

I booked both using vrbo.com, saving a bunch of money off list price.

I'll continue to edit this post after my next visits.

One

We actually found out it was one on Friday morning when the nurse coordinator called. But today we got an email from the lab, confirming the embryo is still going strong and they biopsied the cell for CGH today. They'll freeze it on Wednesday (day 6 since they want it to be a blast and we just took one cell out...)

Oddly, Dr. Sh.er told my husband on Thursday that he got two eggs, but the lab report this morning said there were 3. Apparently only one was mature (this is not uncommon for us, and not surprising given this uneven cycle).

I'm home as of Friday - doing lots of loads of laundry and enjoying not-105-degree weather. Waiting for my period, which should be imminent, then I go back on BCP in prep for IVF 5.2.

Happy 4th of July (slightly early over here on the west coast. :)

Two

Egg retrieval was this morning. We got two eggs. For this following along, that's one more than originally expected, but only half of what we were potentially tracking as of Monday (tho we knew the two small ones probably wouldn't catch up enough).

Retrieval itself was fine. The facilities aren't as nice as at my previous clinic, but not in a major way. Eventually got the IV in my forearm where I like it, after the vein blew in my elbow. :p this clinicdoesnt have the cold numbing spray that my previous clinic used pre-IV but I was a big girl and did fine.

Went to Lotus of Siam for lunch - reputed to be the best Thai restaurant in the country, and it was pretty damn good. Then back to the hotel for a nap. (I'm going to write a post soon about what to do in Vegas when you're here for IVF, with reviews of restaurants and hotels and stuff...)

They gave me a progesterone shot to help bring on my period - they said 2-10 days, but since my luteal phase is naturally short, I suspect I'll be at the shorter end of the range.

Once my period starts, I go back on the pill. And in late July start up the same regimen for retrieval #2. I'm going to do acupuncture (didn't with 5.1 due to travel) to see if that helps with ovarian response.

We did decide to do three retrievals - thanks for weighing in. It came down to: this was designed as our last ditch effort to use my eggs, so we may as well get what we can to give us the best chance of having at least one normal embryo.

I've been wanting to try the Blu.eprint juice cleanse, and got a grou.pon- typ deal for it a month or two ago, so I'll try that sometime in July - figure getting rid of all these drugs in my system canny be a good thing.

Fertilization report tomorrow. Since this is 1 of 3 somehow everything seems less important, so I'm not particularly stressed about any of it. Silver lining, I guess.

I mean, I really hope this works and we get at least one normal embryo. But if not, at least it's a clear sign to move on to DE.

Thanks for all the well-wishes!

Retrieval Thursday

I had another monitoring appointment this morning, and my expectation was that I'd trigger tonight. However, the largest follicle was up to 17mm, and there are now three more follicles above 10mm. So another day of stims may get us something from some of those.

I'm glad things are looking a little better. I just wish the follicles were closer in size - my track record with small (10-13mm) follicles isn't great - usually we get immature eggs from them. In fact I'm not sure we've ever gotten a mature egg. But we'll see...

I'm managing to kill time while I'm here. Went shopping at the outlets today. Tomorrow I'm going to wander the Strip. Wednesday I'm going to Hoover Dam, and my husband arrives Wednesday night.

My trigger shot tomorrow night is going to be in my upper arm, which will be interesting. Apparently, Dr. Sh.er thinks it absorbs better there (although he doesn't believe there's a difference for Gonal F - I was doing upper thigh and then switched to tummy after the first appt showed no progress - I told him and he reiterated it doesn't matter. *shrug*) Upper arm is supposed to be done like a flu shot, so I get to lean against a door jamb to hold my arm still. Lol.

Still noodling on two vs. three retrievals. Leaning towards three. I appreciate all the comments weighing in.

Thanks for keeping me company on my journey!

Back in Vegas

I flew back to Vegas last night for my 10am monitoring appointment today. It was nice to have the week at home, and the flight is only about 80 minutes. I will say, flying to Vegas on a Friday night flight is interesting. The girl next to me and the girl across the aisle spent the whole flight doing their makeup so they could go party as soon as they landed.

Which put me in an interesting spot - the girl next to me was wearing a tiny leopard print mini, black patent heels, and tons of inexpensive jewelry. I was trying to figure out how to strike up a conversation to see if Vegas was work or pleasure (if you know what I mean), so when she started putting on her makeup I commented that she had a lot more stamina that I did as I was looking forward to going to sleep as soon as I got (back) to my hotel. Turned out she was in town for a going away party weekend with friends. Glad I didn't ask my original question... ;)

So the monitoring appointment. I could tell over the past few days that something was growing, as I've had the bloated feeling that comes with stims as they do their thing. Unfortunately, only one ovary is doing anything - three follicles 15mm-7mm. It seems unlikely the 7mm one will catch up sufficiently, so my guess is we get one, maybe two, eggs in retrieval. I go back on Monday morning to see how things are going - my guess is I trigger Monday night for a Wednesday retrieval.

It'd disappointing. My last two cycles with my original IVF doc got me 6-7 follicles and 2-3 embryos each. Dr Sh.er talks about quality over quantity, but of course he'd say that.

I will say, while I do respect his expertise, I don't particularly enjoy our interactions - he's definitely less warm than my previous IVF RE (who in turn was less warm than my pre-IVF doc).

I have to decide before retrieval if I'm going to add a third retrieval cycle to our plan. Even though here I've been talking about three retrievals, then testing, then transfer, we only paid for two initially. We can upgrade to the 3-cycle plan anytime before the first retrieval.

I'm having a tough time with it. On one hand this cycle is so depressing I wonder if a third one is worth it. It would cost another $5k with the clinic, plus about $6-7k in meds. But the genetic testing cost won't change.

This is our last effort with my eggs. And if we can increase production by 50% by doing a third cycle, that seems worth it (2 eggs -> 3 eggs). Of course 2-3 eggs doesn't equal 2-3 embryos as we all know. Statistically, about 30% of our embryos should be sound. So really we're talking about trying to up our chances of having a single normal embryo. Ugh.

My husband and I have been talking about starting a donor egg cycle in parallel - we'd want to do the genetic testing with that as well, so that way we'd end the year with more options. And we do want more than one child (one of the reasons we went to this staggered plan was the possibility of collecting enough embryos that we could possibly end up with more than one normal one. Seems pretty unlikely now.

And if we do have a normal embryo, I lean more and more to getting a surrogate, given my 50% chance of a match that would lead to failure. But we could try donor eggs in me - one at a time, since the match issue is still there.

Blarg. All we want is to have a family. It sucks that it's this hard.

Nothing to report, literally

We flew to Vegas yesterday afternoon, just over 24 hours after I returned from a wonderful, relaxing week in Mexico.

We are flying home tonight.

It's not quite that bad. I'm flying back to Vegas on Friday night for a Saturday morning appointment, but at today's CD9 ultrasound, I had basically no follicular activity. After SIX days of 750iu of Gonal F and a day at 525iu. Which is about $4800 of Gonal F, incidentally.

Fucking depressing.

I've never not responded at all, with my other protocols. Dr. Sh.er says this protocol can take longer, and that the first days of Gonal F are waking up the follicles, but it's hard to believe.

So I'm going to fly back here solo on Friday night, and my husband will join me on Saturday if things have started growing.

This makes an already expensive venture even more expensive. Extra flights, four days of a completely unused hotel rooms... Ugh.

I'm trying to stay optimistic - given the amount of meds going into my body, SOMETHING should happen by Saturday... Right...?

Ps it turns out that while 450iu of Gonal F may not prompt side effects, 750iu does affect my emotions. Joy.

Quick update

Nothing huge to report, but I did get my estradiol checked on Monday and it's satisfying low, so I was able to start estradiol valerate injections last night (I do them Tuesday/Friday nights, this week and next). And I'm all done with Lupron - yay!

Figuring out my packing list for meds and needles, since I leave on Saturday for my vacation in Mexico - I think half my bag is going to be IVF-related. My sister in law has kindly agreed to do my IM shots.

As I've mentioned, I'm largely off twitter these days, since I'm on such a long path for IVF #5. But I hopped on yesterday and was devastated to hear of the sad news @LeLesMe and @MaternalTurtle are dealing with. Love and hugs to both of them.

Cue tears

I started Lupron on Sunday.

I had thought I was done with Lupron after moving to an estrogen priming/antagonist protocol for IVF 3 and 4.

But Dr. Sh.er uses an agonist/antagonist conversion protocol, which starts with a week of tiny Lupron doses (10 IU once a day for 4 days, then 5 IU a day for 3 days).

Apparently, that's not tiny enough - Lupron tears started last night.

I was irritable and sensitive all day, and finally at night I reacted poorly to a funny comment by my husband, and he said 'are you pmsing', and I said 'no I'm on Lupron', and we realized that was behind the whole day of emotional muck.

Oh, and yesterday was my birthday. :D We actually celebrated it over the weekend, when we went up to Sonoma, and we had a fabulous dinner on Sunday night with my husband's sister and her husband, as her birthday is 3 days before mine. And we'll celebrate with my family next weekend.

I am glad to be starting meds for IVF 5.1 - I much prefer the feeling of making forward progress to the feeling of waiting around for things to happen. And even though this is just going to be one of three small milestones on the way to December/January, and even though I have to figure out what we're doing about the DQ Alpha match (I emailed Dr. Sh.er with some followup questions but haven't heard back yet), moving forward is good.

Oh, and I'm extremely happy that Dr. Sh.er lets me do the subcutaneous shots anywhere I want. Upper thigh happens to be really easy for me, and it's nice to give my tummy a break.

Lupron this week, then Cetrotide and estradiol valerate next week.

Hope everything had a nice Memorial Day weekend!

Not the type of surprise I like

(Warning, this is going to be a long, detailed, post.)

I had my followup phone call with Dr. Sh.er yesterday. (He does this after every phone consult, whether or not you're doing a cycle with him.)

Remember that in our first phone consult he wanted us to get tested for a possible DQ Alpha match; although he thought it was unlikely, he wanted to rule it out?

Well, we didn't rule it out. We have a partial DQ Alpha match. Dr. Sh.er believes this, not my endometriosis, explains my elevated NK cell levels and TH1:Th2 issues. We thought we were dealing with diminished ovarian reserve and immunological issues that were manageable. Instead we're dealing with diminished ovarian reserve, and a ~50% chance per embryo that I can carry it to term, even with managing the immunological issues.

My understanding in layman's terms is that the DQ Alpha gene from the paternal side sends a signal to the mother when the embryo is trying to implant, telling the mother to recognize this embryo as "safe" (e.g. don't have your immune system attack it). If the DQ Alpha gene happens to match the mother, then this signal gets confused. With a partial match, 1 out of 2 embryos will match (there are 2 genes that provide this signal, and one gets used in the sperm contribution to the embryo). With a complete match, 2 out of 2 embryos will match. Matching embryos are very unlikely to survive to birth - the NK cell activity gets higher and higher, and eventually Intralipids can't control it.

Since I'm not a doctor, and that's just my understanding of how this all works, here's a link to Dr. Sh.er's recent blog about this topic: Understanding Immunologic Implantation Disfunction"

What this means for us is that a CGH normal embryo will still have only a 50% chance of being compatible with me. And because the match is between the sperm and the uterus, not the sperm and the egg, it means donor eggs aren't a solution - I'd still have a 50% chance for each embryo.

So... in the short term this doesn't affect anything regarding our three planned retrievals. But... once we figure out how many CGH normal embryos we have, we're going to have some difficult decisions about what to do with them.

The safest path would be to use a gestational carrier (who is screened to make sure she doesn't have a partial DQ Alpha match with my husband). That would give each CGH normal embryo the 72% live birth rate chance that Dr. Sh.er expects.

But... I really want to be pregnant. But... the idea of another miscarriage is daunting.

I don't know yet what the chance of success with a matched embryo is - it's not 0%, but it's low. And I don't know how quickly we'd know that it's a problem embryo. (He only transfers one embryo at a time in cases of a DQ Alpha match, so that a problem embryo doesn't lead to miscarrying a normal embryo as well.)

Since I don't expect to have very many CGH normal embryos, I'm not sure I can risk them in my body.

Which is devastating.

I really didn't expect this - our two miscarriages were missed miscarriages, with chromosomal issues. And my pregnancies, short-lived though they were, were easy.

It makes me very sad. And I feel (again) betrayed by my body.

We could choose to use a gestational carrier for our embryos, since we're likely to have only a few. Or maybe use a GC for the first one, and then risk the others in my body. Or use GC for our embryos, and risk donor egg embryos in my body since we're likely to have many more to work with. It's a whole set of options I didn't think I had to face, and it's deeply upsetting to have that all turned upside down.

All that said, I'm glad to know. I would much rather make an informed decision, weighing the risks, than to transfer CGH normal embryos in my body and wonder why they either a) don't take, or b) keeping miscarrying.

If you're feeling supportive tonight, please also visit Augusta who got some devastating news today.

IVF 5.1

It's crazy to write IVF 5. How have I possibly ended up here? It doesn't depress me, it's just shocking that I've gone through that much in the past 15 months.

I'm defining IVF 5 to consist of IVF 5.1 (retrieval in June), IVF 5.2 (retrieval in August), IVF 5.3 (retrieval in October), and then IVF 5 finishes with transfer in December or January (assuming we have good embryos to transfer, which is what I'm doing).

So. Last Wednesday morning my husband and I went to have blood drawn for the DQ Alpha testing. That got sent off, and results should be back in a few weeks, although even if we do have a partial match (which no one really suspects), it won't matter until transfer time.

I also had my nurse consult last Wednesday, just to talk through the medications and pre-cycle testing that I need to redo. Since most tests are good for 18 months, we didn't have to redo them when we started IVF last year, but now they're too old. This is going to be a very different protocol than any of the ones I've done before (micro dose lupron flare, which I should never have been on, and estrogen priming/antagonist which worked reasonably well).

For the gory details, read on...

I'm on birth control pills now - at the end of May I have a week of Lupron in the morning (10 units while overlapping with BCP, and then 5 units for 3 days after that). Then I do a half dose of Cetrotide (like Ganirelix) for about a week, with estradiol valerate injections twice during that week. The following week (when I'm on my trip in Mexico), I start estradiol suppositories in the evenings, start Gonal F at a super high dose in the mornings, along with a full dose of Cetrotide, and twice-weekly estradiol valerate shots continuing. I also start Luveris that week. Then I fly to Vegas and we find out what all those meds are doing to my follicles.

Whew!

I picked up the cheaper meds this week at my local compounding pharmacy (lupron, estradiol valerate, my Novarel trigger, and the estradiol suppositories). The 7 (!!) Gonal F pens, Cetrotide, and Luveris will be coming week after next from Freedom Pharmacy.

The bloodwork I had to have redone was TSH, prolactin and rubella. I also have to have a physical done (form for my local doc to fill out, which will happen on Friday morning) and I may need to get my pap smear done since it's slightly more than 12 months old. I also faxed the forms to my ob/gyn and previous RE to have my records sent to Dr. Sh.er.

I'm happy to have a plan and very curious to see how I respond to this vastly different protocol. I booked our flights to Vegas, and am working on the hotel - since my husband will be working remotely, and we'll be there a whole week, we're going to stay somewhere that has kitchens/laundry. Also booked us to see a Cirque du Soleil show that we haven't seen yet (since they keep opening new ones there.)

I've decided to largely stay off twitter for the rest of this year (e.g. not checking it multiple times a day). I'm not going to have "progress" for 7 months, and it's too hard to see BFPs and pregnancies progressing while I'm in limbo (for a good reason, but still in limbo). I'm still reading and commenting on blogs, and I'll be on twitter more around my retrievals when I have interesting info to share, but I'm focusing on the blog for now.

Not my favorite day

This is my fourth Mother's Day since starting our journey. And I know there will be at least one more Mother's Day childless since the earliest our transfer could be is December or January, making next August-September the earliest we could actually have a baby.

And last week was one year since our first miscarriage.

So it's been a rough day. I went to brunch with my family/grandmother/aunt/cousins, and then spent the rest of the day with my family. Of that group only my immediate family knows about the miscarriage(s) and none of them realized it's been a year.

*sigh*

And my husband just left for five days on a business trip. (On the bright side it's much easier to have him leave this year than it was this time last year... I don't recommend being solo a week after a miscarriage/D&C...)

I'm happy to have a plan for this year and happy to be working with Dr. Sh.er and try a change in protocol. But it's been a long journey and right now it feels like there's still a long journey ahead.

I have a post about my chat with Dr. Sh.er's nurse with more details about my impending retrieval cycle. But I think I'll post that separately in the next day or two.

Gulp

I just paid my deposit to cycle with Dr. Sher in Las Vegas starting with the June 20 cycle.

I also just emailed my current RE, letting him know we were going to do this last-ditch effort with my eggs with Dr. Sher. I had some stress about that, since we are very grateful to him *and* if my eggs don't work out, would like to work with him for donor eggs. But he sent a nice note back hoping that don't need to do donor eggs. Phew.

I have a nurse consult on Wednesday to talk through scheduling and meds and stuff.

Today is CD 2 - my body had a perfectly normal, 32-day cycle last month, which was a relief. I haven't had a natural cycle (e.g. not recovering from a D&C) since last September, and that was the first one since January 2010.

My husband has been very supportive of my investigating Dr. Sher, and trusts my research and my instinct on what the best option for us is. The financial aspect isn't actually very different (3 cycle embryo banking with Dr. Sher costs about the same as two regular IVF cycles with my current RE), but the medications will be more expensive (estimate is $8-10k of meds per cycle - up from about $5k per cycle now), and thinking about it as one big lump sum is intimidating. (Email me privately if you're interested in the specific numbers.)

Traveling to Vegas will add to the cost - flights are about $150 roundtrip right now on Southwest, and hotel will be $100/night. For this first cycle, my husband will spend the entire time with me in Vegas (working remotely), but for future cycles we're likely to have him just fly in at the end for his contribution. :)

One interesting facet of the embryo banking plan is that I can start with a 2 cycle embryo banking plan, and up to my first egg retrieval, can upgrade it to a 3 cycle plan. I strongly suspect we'll want to do 3 retrievals, but if I happened to have tons of eggs, I might consider doing just 2. Anyway, it's nice to have some flexibility there.

Someone asked last time in the comments about why we're doing CGH and why I'll be on the estradiol. The estradiol is to prime my follicles so they're more responsive to the stimulation medications. With diminished ovarian reserve, estrogen priming is a trick they use to increase results. CGH is our choice - having had two miscarriages that would have been avoided if we'd done genetic screening, I can tell you I would pay ANYTHING to avoid going through that again. The physical and emotional cost of a miscarriage, not to mention the delay while you're pregnant find out it's not good, recover from the D&C, etc., is awful. Even if we end up doing donor eggs, I suspect I'll want to test the embryos to make sure we're only putting back good ones.

I'll post again after the nurse consult on Wednesday, but I think I"ll be starting medications in about 3 weeks.

Thanks for all your input!

Second opinion

Yesterday afternoon I had a long phone conversation with Dr. Sh.er. I was interested in his opinion of how to treat my immunology and diminished ovarian reserve, as he's expert in both areas.

He gave me a lot to think about.

Much of the call was a professor-style lecture on how natural killer cells work, and how they interfere with implantation. He'd looked at my records before the call (although some things I pointed out during the call, which I don't mind - I sent a LOT of records). We were on the phone for over an hour.

For my immune system stuff, he would not use Humira, which he doesn't believe is helpful. He does use Intralipids, and also uses prednisone. He would (and in fact is sending me a lab order to) test me and my husband for a DQ alpha match (which interestingly, is now treated with Intralipids, vs. the blood-based treatment they used to do out of the country). He thinks it's quite unlikely we are a partial or complete match, but since the protocol would change dramatically, it's important to rule it out.

For my protocol, he would use an agonist - antagonist - agonist approach. Birth control pills, overlapped with lupron, then 1/2 dose ganirelix, then estrogen priming with estradiol shots every other day, then start gonal f at a very high dose while continuing estradiol twice per week. After 5 days of gonal f, the dose drops a bit, and then he uses luveris until 2 follicles are over 18mm and 50% of follicles are over 15mm.

He doesn't believe baby aspirin is helpful, so I'd just be on Lovenox for the clotting issue.

Probably the most important factor is that he strongly encourages that we do embryo banking. Meaning we would do 3 back to back retrieval cycles, then send all the biopsies off for CGH, then transfer after the results come in. That way we a) collect as many eggs as possible while they're 36 years old (I turn 36 at the end of May) so that we have a chance at a second genetic child, and b) only pay for CGH once instead of multiple times. If we didn't bank embryos, by the time I'm pregnant, have a baby, and finish nursing, my eggs would be 2-3 years older, harder to get given my diminished ovarian reserve, and less likely to be normal.

That would mean doing retrievals in June, August and October, and then a transfer in December.

While I'm not in love with the idea of not being possibly pregnant until December, we do want to have more than one child, and I think this is our best chance of doing so with both our genes. And it would make this year very predictable schedule-wise (the clinic times cycles, so I'd know ahead of time when I'd need to be in Vegas). And I wouldn't be doing immune treatment until November in prep for a December transfer.

With a CGH normal embryo, and a uterus that's normal immunologically, he's getting a 73% live birth rate per embryo.

What I found fascinating (and scary) is that a FISH-normal embryo (where they test 9 chromosomes) is only CGH-normal 55% of the time (CGH tests all the chromosomes). So in IVF4, the FISH-normal embryo that we transferred, given it didn't implant, was very likely not actually a normal embryo. Argh!

Now 3 cycles of retrieval doesn't mean we'll have a ton of embryos. Typically we get 2-3 per cycle. But that would still mean going into testing with 6-9, even if his protocol doesn't improve our rates.

I'm talking with his office manager today to find out how much this will cost, and to learn more about the timing of each cycle.

I'm thinking of this as our last ditch effort to use my eggs. I think working with Dr. Sher would give a sense that we've tried everything we can to make it work. And if come December we don't have any normal embryos, or don't get pregnant using the ones we do get, it will be easier to move on to donor eggs. If we stay with our current doctor, I think it's harder to draw a finish line and move on.

So lots to think about. Retrievals in Vegas would mean being in Vegas from Day 7 until retrieval, every other month. Which is a pain, but manageable. It's only a 90 minute flight from Northern California.

Would love to hear from anyone who's worked with Dr. Sh.er, or anyone who decided NOT to work with him.

Update:

I got the pricing info. a 3-cycle embryo banking package + FET package works out to about the cost of 2 cycle with our current RE. I think meds will be higher, since I'd be on higher doses. It's scary to think about this much money, but it's what we'd likely be spending anyway. And it gives us the chance to have something to freeze. I also got scheduling info - the June cycle is June 20, and that's when I'd have to be in Vegas. Miraculously, this should work perfectly with my vacation to Mexico the week prior, although I'll be doing shots while I'm there.

It is completely terrifying to think about the amount of money we'll be spending if this *doesn't* work and we move on to egg donors. Easily this much money again. *gulp*

Still here

I'm still here -- just quiet because usually it's appointments and milestones that drive my blogging.

We had our WTF phone call today with our RE. He said what I've been thinking, which is this was the cruelest cycle. We had everything lined up, normal embryo and all, but it just didn't implant. (My beta was 1, so he doesn't think it even tried to implant.) Based on how the cycle went, there's nothing he would change -- we're just rolling the dice each time to try to get everything to line up.

Which is basically what I had concluded. It's frustrating, since it's $20k a pop now with PGS...

Speaking of which, I asked about any financial help -- e.g. a discount -- and he said they don't do that for fee-for-service. If we end up using a donor, we can do a shared risk plan based on her FSH (my FSH is the only thing preventing me from doing it). So this next cycle will take us to the $100k mark spent on IVF so far. Yikes.

The other thing we talked about is timing the next cycle around my vacations. We're going to do birth control pills immediately followed by estrace, which will do the estrogen priming while the birth control pills get out of my system. Hopefully that'll work.

The reason we're doing this is that I want to start stims on June 19, right after I get back from vacation #1 (which is active, so can't do it on a 2ww). With natural cycles, the timing is too unpredictable, and if we just did estrogen priming with my next cycle, we'd be doing stims in early June, which won't work.

So we're only pushing things about 3 weeks, and I can live with that. (Also, I really want to go on this vacation. :D) A little more time with my husband, injection- and hormone- free, is always good for our marriage.

I wish there was a silver bullet, but after 4 IVFs we have a pretty good idea of what worked. And this last cycle we just rolled the dice badly on implantation. We now know we can make a normal embryo, and my lining was good (as always) and my immunology numbers were great (aka normal).

I have a phone consult with Dr. Sher on Monday -- I'm most interested in what kind of protocol he'd use for me. Clearly the antagonist protocol works best, but I know he tweaks it to optimize for diminished ovarian reserve patients...

Not much more to report. Moodwise I'm ok. I generally pick myself up pretty fast and start aiming for the next cycle. I have nurse and financial consults for IVF5 the first week of May, and that'll give me my calendar for up to June 19.

Sending sticky thoughts to the big bunch of ladies in their 2ww's right now!

Hope hurts

Beta was negative.

And I really thought I was pregnant (after feeling very pessimistic earlier in the 2ww). I had cramps on Monday, and then twinges here and there all week. I've been dreaming every night. All symptoms I had with the two BFPs, and so I convinced myself that maybe this did work.

But no.

$20,000 down the drain.

This was the one part of the process that I had some faith in my body about -- two previous transfers = two previous pregnancies. Now, the embryos weren't normal, but my body did what it was supposed to. This feels like a betrayal - I put a known good embryo back in there, and my body didn't keep it safe.

At least we proved we can create a normal embryo.

And logically, I know there was about a 30% chance of a live birth with a good embryo, so the statistics are not on my side. But I had such a good track record with implantation...

I go off meds tonight, and schedule the WTF appointment tomorrow, although there's not much to discuss. We'll do another cycle or two this way, with the PGD, before considering other options.

And I turn 36 in May. And I won't have a baby this year. It hurts.

Girl power

Home resting after transfer.

It turned out that the normal embryo was also in the best shape - grade II early blastocyst. The next best embryo was also a Grade II early blastocyst but had one monosomy. There's about a 5% chance it's actually normal with two markers that were too close together to distinguish. The third embryo was a Grade II morula but had two monosomies, which gives it only a 1% chance of being normal. (Grade I and Grade II embryos have the same chance of live birth.)

We transferred the first two. All three were female, so that wasn't a factor (we would have chosen to transfer one of each if we'd had the choice).

He estimates 30% chance for the normal one (based purely on age (almost 36) and the Grade II characteristics) and like I said 5% for the other. I feel more optimistic than this would suggest, since I've gotten BFPs from both prior transfers. But we'll see - at least we know we can make normal embryos!

Transfer was a little more involved only because he had to switch to a more curved catheter.

And I gave myself the giggles when they radioed that the embryos were on the way and I called out "embryos walking!". Hee! I had to not look at the ultrasound screen cuz all the juggling kept me laughing.

Since it's a Day 5 transfer, implantation could be as soon as tomorrow night. I'll go out to acupuncture tomorrow but will otherwise be at home.

Betas at 10 and 12 days post transfer.

Thanks for all your support! And I'm so thrilled that Lady Pumpkin and Jen had transfers today as well, and CGD got a fabulous fertilization report!

Relief

Transfer is on for tomorrow at 11am!

I got the call from my RE today with the results of the PGD. All three embryos are still in the running -- one came back normal (on the 9 chromosomes they test), and two are 'swing' embryos, which means they only saw one marker but there could be two that are just close together.

We're currently planning on transferring 2. If the swing embryo only has one marker for some chromosomes, it'll either fail to implant, or disappear as a chemical pregnancy by 5 weeks, and according to my RE wouldn't risk the normal embryo. If it's actually a normal embryo, then we have slightly elevated chances of having twins (since both embryos would be normal, and twin probabilities are based on unscreened embryos, so some are abnormal).

My husband would prefer twins, although he admits that's an emotional response. This week, Dr. Sher had a great post about deciding how many embryos to transfer, which I sent to my husband and he found very useful and informative.

I'm ok with the idea of twins but would still prefer to have one at a time, given the risks and costs of a multiple birth. That said, I'm EXTREMELY interested in having at least one baby, hence the two.

We're relieved to have at least one good embryo, and maybe more. I was steeling myself all day for the (not unlikely) possibility of having nothing to transfer.

Phew. And just in time, I have a bunch of Netflix discs coming in the mail tomorrow for my bed rest.

Please send good thoughts to my friend Jen at This is Personal - after a rough day, she's waiting to see if any of her four embryos make it to a transfer tomorrow.

And please also send good thoughts to Lady Pumpkin who's waiting for her PGD results for a hopeful transfer tomorrow.

Three

Quick update -- got an update from our clinic. Our laggard embryo didn't make it, but our three from yesterday are still growing. And it turns out we did have 7 eggs -- 3 mature, 4 immature (one of which matured overnight and became the laggard -- we've never had success with those late-maturing eggs, tho...)

Next update should be Wednesday -- afternoon call to tell me transfer time for Thursday (since we won't know yet if we have something to transfer) and then evening call from my doctor with the genetic screening results. Of course we could get a call before then if we lose all the embryos, but hopefully that won't happen.

Feeling less sore today but still swollen and squishy.

Sending good wishes and #hope over to Jen at This is Personal - her transfer is Wednesday!

Three maybe four

This afternoon I commented to my husband that based on 7 eggs, we'd end up with 3-4 embryos.

In fact, based on 6 eggs (not sure where the 7th went -- I guess there wasn't one in there after all?), we currently have 3 normally fertilized embryos, and one laggard where the egg matured overnight and was fertilized today. We'll find out tomorrow if that one fertilized normally.

This is our best result so far from an IVF cycle. Small numbers compared to lots of people, but good for us. Incidentally, I'm considerably more sore post retrieval this time and have no idea how you people with 20+ follicles handle it.

One bonus of having a laggard is that we'll get daily updates as long as it's in the running. Here's what the week looks like:

Saturday - retrieval
Sunday - Day 1 report for regular embryos
Monday - Day 1 report for laggard embryo (Day 2 for regular embryos)
Tuesday - Day 3 report for regular embryos (Day 2 for laggard embryo)
Wednesday - Day 3 report for laggard embryo (Day 4 for regular embryos)
Thursday - PGD results for regular embryos (Day 4 for laggard embryo) and transfer of any good ones if laggard doesn't make it
Friday - PGD result for laggard embryo and transfer of any good embryos

So from Day 3 transfers in previous cycles, we could end up with a Day 6 transfer if we get lucky enough to have that laggard in the running.

Although we may not end up with anything to transfer. But so far so good!

Thanks for all the well wishes. I had 128 visitors to my blog today prior to writing this post - whoa!

Lucky seven

Back home from retrieval.

Amazingly, out of 8 follicles we got 7 eggs. We won't know until tomorrow how many are mature. (And my RE noted that if any are immature and mature overnight, we could end up with a Day 6 transfer instead of Day 5.)

My NK and TH1:TH2 came back completely normal, so no Intralipid today. If we transfer and get a BFP, then my next Intralipid will happen then. Lovenox starts back up tonight and progesterone (in ethyl oleate) starts Monday.

Retrieval was smooth. Had an anesthesiologist I like (I've had 3 different ones), IV was easy, no nausea. Slept a little longer than usual post retrieval, but otherwise very normal and easy. They all know I have to be flat for IV going in and out, so we have our routine down.

Thanks for your well wishes, everyone!

Retrieval Saturday

I should have posted yesterday but never got around to it...

Ultrasound yesterday morning (Thursday) showed that we're definitely ready to go. Largest follicle was 19mm, then 18mm, 15m, 13mm, 12mm, and 3 around 9-10mm. So 8 total, with 5 that are good possibilities. Lining was great at 11.7 (it's always good -- the one thing I don't have to worry about).

Estradiol was up to 1189, LH slightly up to 7.0 and progesterone low at 0.3. I triggered last night at 9pm and have enjoyed a shot-free day today.

(In unrelated news, I actually had an unplanned shot yesterday. I had LASIK in January and an eyelash grew back ingrown. My LASIK followup was yesterday and I asked my doctor to deal with the eyelash. This involved a numbing injection to my *eyelid*. Eek! Tiny needle -- 30 gauge. I bet he doesn't have many patients who understand how small that is...)

I had a meltdown last night... Scared that I'm going to spend this whole year trying to use my own eggs, and then have to move on to donor eggs. If I knew today I'd have to use donor eggs, I could reconcile to that, but I can't know that. Urg.

I wasn't feeling swollen yesterday but today I have been very tender. The Lovenox started Tuesday and that's causing more bruising, of course. So I had a low-key day, mostly puttering around the house.

I'm not particularly optimistic that we'll get to transfer anything next Thursday. So many milestones:
-how many eggs retrieved
-how many mature
-how many fertilize
-how many make it to Day 3
-how many make it to Day 5 (we've only done Day 3 transfers in the past, so I have no benchmark for this)
-how many pass the PGD screening. (Seems like too many hurdles for 5-8 follicles...)

It would be awfully great if we had a good embryo to put back in! And if this one isn't it, then this fast cycle means we'll be able to do the next one sooner.

We'll wake up early tomorrow -- have to be at the clinic at 8am for a 9am retrieval. No word on my NK and TH1:TH2 results so I don't know yet if I'm having an Intralipid infusion tomorrow.

Sending good thoughts to lady pumpkin who is also having her retrieval tomorrow morning.

Whoa Nelly

(If you're following along with IVF #4, you may be interested in following some of my cycle sisters as well that I listed in my last blog post.)

CD 7 today, based on my clinic counting first day of stims as CD 2. Went in this morning for ultrasound and bloodwork (serious bloodwork - NK, TH1:TH2, estradiol, prolactin, progesterone, LH = 7 vials).

Now, normally I'm a long stim girl -- my retrievals have been on days 14-16 for my previous three IVF cycles.

Not this time. My right ovary has 5 follicles -- the biggest is 15mm! Quick, get some Ganirelix in her! They actually loaned me a Ganirelix so I could take one this morning at the clinic, and when I go back in on Thursday I'll give them one of mine.

So right ovary has a 15mm, a 13mm, an 11mm, a 10mm and a 9mm. The left ovary has two follicles, the larger of which is about 9mm.

Apparently the extra long estrogen priming meant they were really juiced up. Not fabulous, since there's a pretty big spread between the biggest and the largest, but that's what we have to work with.

On one hand, I'm disappointed, because in October we got 6 eggs from 7 follicles, and half were mature. It's likely we'll probably get 4 and 2 will be mature. And then with PGD, we may end up with zero. But, we knew going in that we're likely to have to do a couple of retrievals before getting a good embryo to transfer. And retrieval happening sooner means the next one can happen a little sooner too, should we not get any good embryos this time around.

Silver lining -- this will be the first cycle where I haven't had to order additional meds! At $800/Gonal F pen (for 2 days worth of meds) that's handy.

The hormone bloodwork came back this afternoon and my estrogen is at 714, prolactin/progesterone/LH were all properly low. In October, my estrogen was at 848 on CD 11 and 1137 on the day of trigger (CD13), so I'm way ahead.

Next monitoring is Thursday, and he expects that I'll trigger Thursday night for a Saturday retrieval. The NK results should come back Thursday and the TH1:TH2 will come back Friday. Since my Intralipid was last Thursday I suspect he'll only have me do one with retrieval if my levels are still elevated (last time he did one even though they were normal, but it had been a few weeks since the Intralipid and he wanted to be proactive.)

In unrelated news, I had lunch with a friend who confided that she recently had to terminate a pregnancy at 20 weeks due to an incompatibility-with-life diagnosis. The CVS showed no problems so it was a complete surprise. Heartsick for her...

Yay for Injections

I emailed my clinic again on Friday as I knew I'd need another estrace prescription called in, and was wondering if I needed to do Ganirelix again, and they told me to get estradiol/progesterone checked on Saturday and then they'd figure out what I needed to do.

Bloodwork showed high estradiol (expected because of the estrace) and very low progesterone. So when they emailed me back on Tuesday they told me to come in on Wednesday for an ultrasound and more bloodwork.

The ultrasound showed a great lining (9.5, lol) and quiet ovaries full of resting follicles. For once, my RE was enthusiastic about my ovaries. He thinks I didn't ovulate, and so just got an extra long estrogen priming protocol. Since things look good, he told me to start stims today (Thursday)!

What a relief -- I was imagining horrible scenarios like having to redo an estrogen priming cycle, and thus being put off for two months. So glad I get to start sticking myself with a needle now instead.

I also went in today for an Intralipid infusion (the first one without my husband there -- happy to report it went smoothly). Next Tuesday is my first monitoring appointment, and a giant blooddraw for hormone levels and immunology -- so it'll be something like 7-9 vials of blood. Ew.

Same protocol as last time -- 225 IU of Gonal F and 75 IU of Menopur, morning and night.

Happy to be doing this cycle with some cycle sisters:

cgd at Adventures in Infertility Land

Jen at This is More Personal

Madame Pumpkin at Planting a Pumpkin Patch

Tillien at a nuttier life

Lori at Love, Life & Infertility

Let There Be Sims at Wishing for the Gift of Life

Kittygirltx at Mission to Baby

Rebecca at Trying Not To Scream

Bobbi at The Johnson's Journey

Roccie at Roccie Road

Anyone else starting a cycle around now let me know and I'll add you to the list. :)

Relaxation only lasts so long

We're back from a lovely week in Hawaii. It was very low-key. I snorkeled one morning, but otherwise read by the beach or pool while my husband snorkeled, body surfed, and scuba dived. I'm certified for scuba, but am nervous about ocean dives, so I decided to skip it.

The weather was great, which is one of the predictable things about Hawaii. We didn't even get any rain during our week. At home in California it was rainy and cold. And is still really cold, but not raining until the weekend. (Really cold = highs in the low 50s -- you snow-bound folks can now laugh at me.)

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For those of you who have been following along, I expected to have a monitoring appointment on Sunday and start stims on Monday. Well, that was based on AF coming before/during my vacation. Which it didn't.

I'm annoyed, because I told my clinic that I was very uncertain about when my last period was, and they said it really didn't matter. I now suspect that the bleeding that finally ended at the beginning of February was probably the end of AF. Which means starting estrace on February 7 was probably pre-ovulation, as was the Ganirelix.

No idea what that means for priming my follies, but I rather suspect it isn't good. I emailed my RE on Thursday night (from Hawaii) and my clinic relayed that he said to keep taking the Estrace.

I'm mildly annoyed at my body for not being easier to read, and more annoyed with the clinic for not listening to me. A blood test could have indicated where in my cycle I was.

Now I have no way to estimate when retrieval and transfer will be. If the estrogen priming cycle was wasted, that would push us back an entire month. If it wasn't wasted, then it'll depend on when AF shows. Today would have been counted as CD2 if I'd started stims.

Grr.

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I'm having some trouble reading new baby blogs and tweets right now. Please don't take it personally if I stop reading/commenting, it's just not where my head is at, and I'm trying to avoid the negative feelings that sometimes/often arise. I'm thrilled for those of you that made it to the finish line.

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amiracle4us asked about my immune treatment in the comments of my last post...

For IVF #1, we did two shots of Humira, two weeks apart, pre-stims, and then did Intralipids starting with a positive pregnancy test (so roughly 4 weeks and 7 weeks). Before the treatment, my RE rated my NK levels as a 4/5 (where 5/5 is worst, and 0/5 is normal). After the Humira I was down to a 1/5.

For IVF #2, we did Intralipids -- one pre retrieval during stims, and then none after because of the cancelled cycle.

For IVF #3, we did two shots of Humira, two weeks apart, pre-stims (bloodwork a week after the shots got me to a 0/5 -- completely normal NK and TH1:TH2 levels), an Intralipid with retrieval , another after the positive pregnancy test, and had another scheduled for 3 weeks later. When I had the first ultrasound with my ob/gyn, it was a day or two before the scheduled Intralipid. Because the heartbeat was low, he did an unplanned Intralipid right after the ultrasound in case immunological factors were involved in killing off the embryo. (Which turned out not to be the case - it was a chromosonal abnormality.)

I asked my RE why he wanted to do an Intralipid with retrieval even though I was showing completely normal NK and TH1:TH2 levels, and he said it's easier to stay ahead of things instead of being reactive to increasing levels.

IVF #4 has involved the 2 shots of Humira during what's hopefully my estrogen priming cycle, and I'll repeat the bloodwork after AF to see if my levels are normal or not.

Hope that helps!