Showing posts with label PGD. Show all posts
Showing posts with label PGD. Show all posts

Thursday, May 28, 2015

8 Weeks - Heard Bean's Heartbeat!

This morning we had the absolutely exquisit pleasure of hearing little bean's heartbeat for the first time. It was such a beautiful sound, thumping away, beatbeatbeatbeatbeat like a strong, steady drum. I can't stop listening to it, I need to take a longer video of it next time so I can listen on repeat.

8 week little bean! Not a great photo but still adorable

The downside of the appointment is that we really didn't love the doctor we met with. She's not on my schedule for any other appointments so I'm hoping she was just the ultrasound dating person and not one we're going to have to see again. She argued with me about how far along I am, didn't seem to understand basic post IVF medication (estrogen and progesterone are pretty much standard), wasn't going to look for my SCH even though I told her I had one and more importantly didn't seem to understand PGD/PGS. I introduced myself, explained that this was an IVF/PGD/PGS pregnancy, these are the medications I'm on etc. And she's like oh....I see here you're a FX carrier? You know you could pass that on to boys....and E and I looked at each other like WTF? Is this lady for real? I explained again that yes, I knew I was a carrier since I JUST said we did PGD/PGS and that I was aware my mutation could be passed on to both boys AND girls HENCE THE PGD. Then she asked if I had seen the genetic counselor to talk about passing on my mutation. OMFG.

She was nice and thorough otherwise, I just don't think she has any idea what PGD/PGS is or she wasn't listening when I tried to explain what we'd done. It was disconcerting and we definitely don't want to see her again. We worked way too hard to get this baby to continue care with someone who doesn't understand everything involved.

Monday, December 15, 2014

Unexpected Decisions

I finaaaally got my period after what feels like forever! I know it's only been one month off but man did it feel like a long month, especially because my period was a little bit late too. Now that it's here and I feel like my cramps are attempting to compact my insides, I gave my nurse a ring and she brought me in for my baseline ultrasound and labwork.

E and I went in together for this visit and took care of the thaw and transfer consent paperwork. This set has to be completed in person with a witness so we had to wait for a day when E had enough time to come in. We also filled out our financial commitment paperwork and gave them all our credit card information for the FET fees.

Everything was going pretty smoothly until we got to my ultrasound. I don't have any cysts or issues that could cause problems with a transfer but when she waved the wand over my ovaries I saw way more antral follicles than I usually have. I asked her to go back and count them and to my surprise, I have 19-20 antral follies! That's a crazy high number for me, I never have that many, it's a basically normal number. I was floored.

I mentioned the high count to my nurse in passing as I was leaving the ultrasound room and the first thing she did after confirming the number was ask me if I wanted to do another IVF cycle. I was both surprised and not at the same time, that's an amazing AFC for me and could potentially yield a really nice number of embryos. But it would mean starting from the beginning again, IVF, medications, PGD, PGS, the whole shebang all over. It would mean putting off a transfer for at least 2 months. Spending all that money right after we finish paying for the first two cycles.

I told the nurse E and I needed to discuss it further and that we'd proceed with the FET protocol for the time being. The first part of the procedure is the same, two weeks of birth control, so we have a little bit of time to figure things out.

I really wasn't prepared for this option. My last cycle was such a junker it didn't occur to me that I might be perfectly primed now. E and I have been waiting so long to hold our baby I really don't want to delay.  Then again, it's likely we'll need IVF again in the future since we didn't get quite as many embryos as we were hoping for to have multiple children, and doing another round of IVF now would be a lot easier than doing a cycle with a young baby and a mortgage.   It's such a tough decision I'm not sure where we'll go from here.

Sunday, December 7, 2014

Medicated FET

I just got the list of things we'll need to get done before our medicated FET can begin. I was hoping we wouldn't need to get to everything on the list before I can even start birth control but no such luck.

First up:
  • Get financial clearance, this means calling their financial manager and getting her approval to go ahead with the FET. I'm waiting for a call back from her on Monday. On the subject of money, Reprogenetics never asked us for payment for adding on PGS to our PGD testing, even though I called them and tried to give them my credit card at least 8 times. Maybe they tried to bill my insurance for the PGS as well as the PGD since we had an abnormal embryo? I don't know but I hope it doesn't hold us up. I'm prepared for the clinic's financial person to bring it up just in case and I'm expecting them to send a bill any day.
 Next on the list:
  • Get yet another infectious disease panel. I had a huge panel run when we started infertility testing that I had transferred over to the clinic before we started IVF.  Apparently it is now out of date; it needs to be done within a year and since mine is technically from last August, I need a new one. I really don't want to pay a ton out of pocket for it at the clinic so I'm going to see if I can get my OB-GYN to order it. 
Third one isn't so bad:
  • Go in person with E to sign consent forms for thaw and transfer. It would have been nice if we could sign and email the forms but to do that we'd need to have them notarized which is just as inconvenient and not going to happen. Instead, I just need to find a time we can both go in to take care of it. 
And finally, progress!
  • Order all the meds! They're thinking BCPs, Lupron, Estrace, Progesterone in oil (not sesame!), HCG, baby asprin, Endometrin, Z pack, Medrol, and Naproxen. They also offer Valium but I'm going to pass on that since I'm not a nervous wreck. It's really for patients who can't relax for the procedure but having been through two IUIs (I've been told an IVF transfer feels just like an IUI, basically painless) a HSG and a Hysteroscopy without meds I'm quite sure I don't need it.

My one gripe is I actually had to call and request the list myself, because I need to be super psycho prepared for this stuff in advance, and I kind of wish they would have taken the initiative to send it sooner. If all this needs to be done before I start medication and I was told to "call on the first day of my period", leaving 2-3 days before I'd need to be on medication, I'm not sure how I was supposed to get this done in that time frame. I'm probably starting to PMS a bit since my period is right around the corner but it's rubbing me the wrong way a bit - shouldn't they be more on top of getting me this information? I'm now waiting on a second email from the nurse as well, giving me the details about which tests they want me to ask my OB-GYN to run. It makes me wonder if they think I'll probably get bumped for the holidays so there's no rush :/  

I really hope not, I'm so ready to get this embie back home where they belong! I am going to make this baby to stick through sheer force of will and the sooner I get them back into my body, the better.

Wednesday, November 26, 2014

TWO BABIES To Be Thankful For!

We got our results a day early! We have TWO HEALTHY EMBRYOS! TWO!

We followed statistics for my mutation transmission almost exactly. We had a 50/50 shot of the embryos being healthy and we sent in 6 embryos. 3 of the 6 tested were mutation free, but unfortunately one of those 3 had a tiny chromosomal deletion. I asked if there was any way this frostie might still be viable but Dr. D said that with deletions like this, there are usually other segments or things missing as well. This makes me so grateful we decided to add on the PGS, without it we wouldn't have found out that this frostie is sick and would have had a heartbreaking miscarriage or worse, might have had to terminate for defects incompatible with life.

I'm so relieved, I feel like I'm going to cry and possibly be sick at the same time. We still have a long way to go, these babies need to stick! but we're so much closer to actually holding a healthy baby. After seeing so many of these cycles yield nothing to transfer, I'm so, so happy we have healthy babies to transfer.

We are all made of stars
Dr. D needs to confirm it, but it looks like one embryo came from our first batch and one from the second. They're both hatching blasts and although Dr. D told us the genders, we've decided to keep it a surprise. We'd really like at least one thing to be normal about our pregnancy process and since nothing else has been, this is going to be it.

After getting the good news, I asked Dr. D whether he thought we should proceed with our frozen transfer or whether he thought we needed to cycle again and try to get more embryos. They usually say (without PGS) that you need 2-3 embryos per child you'd like to have, and since E and I would love 2-3, but would be happy with any at this point, I knew with only 2/6 that we might need to cycle again. As I've said before, we don't know how quickly my fertility is going downhill but we definitely know it is going. I was ready to hear that we'd need to do this whole process again but Dr. D feels that with my age, if we need IVF again in the near future I should still be young enough to produce some good eggs. I'm not sure if I agree because FXPOI complicates things in ways not reflected by age but I'm going with it.

We have so much to be thankful for this year that I'm overwhelmed thinking about it all. I'm thankful for E and our friendship and marriage, going through this is incredibly difficult and I think it's amazing that we've been able to stay strong and united. I'm thankful for all our friends and family members, who have been incredibly supportive and have helped us stay sane thus far, especially through all the mind numbing waiting. I'm thankful for Dr. D and SCRC for helping us get these two embryos, who with any luck will both be coming home with us as two healthy babies. I'm thankful for IVF and especially for PGD, I'm so grateful that we live in a time where we have the tools and technology to create and screen embryos for so many horrible diseases. And I'm so, so thankful for the two healthy embryos, our two little fighters, who for the first time have given us a real shot at a healthy family.

With a whole lot of hope, wishing, crossed fingers, science and love, we will have a healthy baby in our arms this time next year.

Happy Thanksgiving everyone. I hope you have a wonderful holiday with all of your loved ones.

Waiting, Wondering, Worrying

Well here we are, the day before Thanksgiving, the day before we're supposed to get our results. I thought I'd been dealing with the waiting and what ifs pretty well, I've been staying super busy and for the most part haven't allowed myself to think or dwell on it. I've been intently picking out super cute leggings from various Aussie websites (It's turning into an addiction and I don't even have my first pair yet), hunting for boots to go with said leggings, working on my aquarium which is always soothing and getting everything ready for Thanksgiving. I haven't been counting the hours but it would pop into my head every few days that we were that much closer to results. Somehow they always seemed far off, something that would be happening in the future.

Now, it's the night before and I'm thinking I'm not so okay. After a conversation about socializing with friends turned into a conversation about parents and babies, I suddenly felt quite irrationally emotional, like a cup in the process of overflowing. It's clear that even though I haven't been consciously dwelling on it, my subconscious has been drowning. I tend to internalize things so I can carry on calmly and I now feel like an idiot for genuinely not knowing why my hair seemed to be falling out the other day. It's one of the telltale giveaways that I'm under stress but at the time I couldn't think what it could be. Way to block out the big stuff brain, I'm sure that's super healthy.

On what will likely be the eve of our PGD results reveal unless the clinic closes for Thanksgiving, which is still a possibility, it appears my brain has run out of distractions. It's hit me like a freight train that this is it and I don't know what to do.  I can't stop going over horrible things even though I'm trying to put only positive energy and thoughts out there.

We still haven't paid for our PGS. H never called me back to get our credit card. Does this mean all our embryos were effected so they never did the PGS screening?

What if all our embryos are sick? What if we went through this for nothing?

What if they don't call with our results? How will I get through Thanksgiving with all those people? How will I get through it anyway if it's bad news?

E just got sick and has probably now exposed me. Will that effect our FET if when we get there?

I'm so, so scared our results won't be good. We've been through so much, I've been through so much I need these frozen babies to be healthy.  Now all I can think about is the worst case scenario and I feel like I'm going to choke on the lump it brings to my throat. Please be healthy embryos. Please be healthy.

Thursday, November 20, 2014

Christmas Delays?!?!

Originally, I was planning on putting an embryo back straight away after this IVF cycle. I psyched myself all up for a November transfer and told myself I'd have good news for the holidays. I was ready to go, let's get this embryo toasty warm in my uterus!

Then, Dr. D put the kibosh on that. He said I've been injecting waaay too much medication into my body, two months in a row, and that wouldn't make for the most ideal environment for our embryo. Damn. He suggested that we take a wash cycle, wait for the drugs to really leave my system and start fresh with a nice, fresh cycle. Okay, I don't love the idea of waiting yet another month, but I would never do anything to jeopardize the success of my frosties so I got on board. One wash cycle to get everything out and THEN we'd thaw out a frostie and put it back.

With a regular cycle, it's pretty easy to plan when things should be happening. With this period showing up right on time I was pretty much positive that we'd be doing our transfer shortly after Christmas, probably sometime around the 28th if Dr. D really planned on transferring on CD 17. I've heard some people transfer later, closer to CD 20 or 22 but Dr. D said CD 17 so that's what I went with. I psyched myself up again for a Christmas transfer told myself I'd have wonderful news around January 9th. A September baby would be wonderful, right before the holidays really started to pick up.

I was reading through my IVF support group, reminding myself to practice patience when I read about some clinics closing for the holidays and delaying treatments. This should have been obvious, of course they'd want to go on holiday, but my clinic couldn't be closing because I'm transferring right after Christmas, right?  Right??

http://i788.photobucket.com/albums/yy165/DrBeardface/Cartoon%20Draft/darth_vader_noooo1.jpg
Nooooooo!!!
I got on the phone to Dr. D's nurse and asked them about their Christmas schedule. Bam, my worst fears were confirmed. They usually close for two weeks spanning the end of December to the beginning of January. Fuck. Right over when I was supposed to be doing my transfer. Double Fuck.

I explained to the nurse that I was supposed to be transferring over that time period and wasn't expecting my period to start until December 12th. She elaborated that the ART center closes completely for those two weeks but there's still a crew on the clinic side. The last day for most things is December 18th and there are only certain days after that where they can perform specific procedures. This is probably for those people who need to stim longer than expected and need their retrieval done over those two weeks, not for people who are looking to transfer a frozen embryo that's perfectly happy waiting on ice.

She told me to call with the first day of my period and we would see how things look then but it looks like we'll be delayed yet another month. I was just getting used to the idea of taking one month off and now we have to take two. I told my acupuncturist S how disappointed I was and she said that success rates are lower around Christmas because people are stressed out so I wouldn't want to transfer then anyway, but I'm pretty sure she was just trying to make me feel better. I don't see out of town family members or deal with a lot of family drama over Christmas so I'm fairly certain that my chances wouldn't be any lower just because it's the holidays.  My frostie certainly doesn't know it's Christmas.
All I want for Christmas is a batch of healthy embryos! One in my belly and the rest on ice.
If we have to wait two months, we won't get to transfer until the end of January, probably around the 25th. This means that I would potentially be getting good (because I refuse to believe otherwise) news on my birthday. It would be a wonderful birthday gift but I'm so anxious to get an embryo back where it belongs. This process takes so long and every month more feels like forever.

Wednesday, November 19, 2014

News To Be Thankful For?

I still haven't heard back from H, the financial person at Reprogenetics, so I shot an email off to my Reprogenetics genetic counselor D to see if she could give me an update. H is usually really good about getting back to me, she must be on vacation or out of the office because she's never had me wait more than a couple days. I know they won't release my results until they're paid so she's going to have to get back to me eventually to get my credit card.

Lucky for me, D is in the office and she got back to me pretty much right away. I asked her to confirm that she'd received the samples since I had only heard from Dr. D about that, and asking whether testing had begun because we can't wait for some good news.

The message I got back basically said:

I know the waiting is hard. We've started testing,  it will take the full 15 days. You'll know on 11/27.
http://touchofheavenyardart.com/yahoo_site_admin/assets/images/_11_kt_Garfield-Thanksgiving-Turkey.188124659.jpg
I know Garfield. I know.
For those who didn't catch that bit at the end, 11/27 is Thanksgiving. When we will have all sorts of people in the house. We will be getting either really good news or really bad news with a house full of people. The waiting is so tough,  I can't wait to find out, but this is not how I wanted to do it.

Plus, I'm sure Dr. D won't be working on Thanksgiving. If he's not in the office, we don't get our results. Reprogenetics is sending them directly to Dr. D not to us, since the sensitive information should be explained by a doctor yadda yadda. I'd honestly rather they just email them so I don't have to talk to anyone if the results are bad but that isn't an option.

E and I wanted time to ourselves to process and deal with the results. We didn't want to share them with the few family members who know, especially if they're not good, until we'd digested them and figured out our next move. Honestly we really wish they didn't know the testing was going on since their questions/expectations/hopes/certainty really make us feel worse and not better. I don't think they realize how difficult the process is, how often people end up with no healthy embryos to transfer. Even with 6 to test, we could very easily have no healthies and their certainty that all our embryos will be healthy and everything will be roses and sunshine feels shallow.

Maybe we'll get lucky and we'll get wonderful news early. I'm still hopeful that our embryos will be healthy, that we'll have 6 frosty babies to be thankful for this Thanksgiving. But it would be really nice if we could get our results without an audience.

Sunday, November 16, 2014

AF With A Vengeance

Unsurprisingly, my period showed up exactly on time, 11 days after my trigger. There has to be something said for predictability, at least I know when the witch should be rearing her ugly head. The first couple days I had to top up my Advil every 4 hours instead of every 8+ like I usually would, those cramps break through surprisingly quickly. A couple days in they're not awful, uncomfortable yes, but I'm good with just a couple Advil each day.

I think the toughest part has been waiting with nothing to do. I've taken the supplements, done the injections, done the retrievals, and now all I can do is wait and wait for my test results to come back. There's absolutely nothing I can do to help or speed up the process which is a very unusual position for me to find myself in. I'm not even sure if they've started the testing yet since I haven't heard back from the financial person yet, I'll probably give both her and the lab a call tomorrow to ask for an update.
http://sd.keepcalm-o-matic.co.uk/i/keep-calm-and-wait-for-the-results-5.png
(And wait....and wait...and wait...)
Once I stop bleeding like a dying person and feel halfway normal again, my plan is to hit the gym hard and try to take off some of this IVF weight. I feel like I've been packing on inches by the handful and I'd really like to get some of it off before I get pregnant. I already know I won't be allowed to gain a ton of weight, not that I really expect to gain a ton anyway, but it would be nice to start at a more normal point for me instead of this far ahead. Of course, starting a diet/exercise plan right before Thanksgiving is probably not the smartest thing I've ever done, but I don't have a lot of time and I need to get rid of this IVF fluid belly so I have room for a baby in there!

Wednesday, November 12, 2014

Biopsy Samples Off!

This was supposed to post yesterday, I'm not sure why it didn't :/ Weird! 

I wasn't expecting a call this morning since our embryos have already been biopsied, vitrified and tucked safely away, so I was surprised and a little worried when I saw SCRC come up on my caller ID. It turns out Dr. D was just calling to give me an update and let me know that my biopsy samples had been shipped and should be arriving at Reprogenetics today! I wasn't expecting them to ship out so quickly, especially since today is a holiday, but we're officially ready to start testing.

Dr. D said he spoke with Reprogenetics today and they're going to run our tests consecutively - the PGD for Fragile X first, and then the aCGH PGS on any unaffected and premutation carriers. This means that only Fragile X negative embryos will be screened for chromosome issues, which makes sense. What I'd like to know, is if we pay for "up to" 8 embryos and only test 6, can we test 2 more in the future without additional charges? Probably not, but its definitely on my list of things to ask them since I've heard of other people doing this with their labs. I still need to give them my credit card information for the aCGH but I haven't been able to get in touch with their financial person H yet. I left a message with their messaging service on Monday so I'll probably call again tomorrow.

Cilly sneaks into the linen closet for a relaxing nap
Dr. D also hinted that he thought we might get our test results early. He said the 15 day estimate was quite conservative, if the lab was busy, etc. Once the PGD is complete, and this is the portion that takes a bit longer, the aCGH will be performed the next day and then we'll have our results. Everyone at the clinic has their fingers crossed for us and we're all thinking positive and willing these embryos to be healthy.

As for recovery, I'm still really bloated and starting to get occasional cramps in anticipation of my period which should be due at the end of the week. I can wear my regular jeans but the belly is definitely there and it's deflating unevenly. When I woke up this morning my belly button looked off center which is so weird, the right side seems to have gone down a bit faster than the left. I can't wait for my belly to be huge and lopsided because there's a tiny person in there, not just a ton of fluid.

Monday, November 10, 2014

Day 6: SIX EMBRYOS Going For Testing!

Both embryos made it! Holy shit! We now have two more hatching blasts to add to our batch, making 6! I can't believe it, after such a crappy cycle and only retrieving two eggs, I never would have dreamed they'd both be strong enough to make it. Taking them to day 6 was definitely the right decision, the embryologist says they look perfect.  We're going to send these 6 samples out for PGD/PGS and hope/pray/wish/cross everything that they're healthy!!


I was planning on putting one embryo right back once we get our results, an early December transfer, but the doctor says I should take a "wash" cycle. Not everyone needs to take a break but most people only take $1800-$4000 in meds for their cycles and do just one. I've been injecting $9200 in hormones two months in a row and he thinks I should have two periods to wash them all out. The first would be the upcoming one, due at the end of this week if I follow last cycle. Then I'd wait a month, have my next period and start the medication for transfer. He's right and it makes sense, I would never rush anything that could compromise an embie's successful implantation, but it's so hard to be patient!

Right now our biopsy samples are probably being packed in liquid nitrogen and readied for their journey to the east coast. I believe they'll be over nighted to Reprogenetics and then as long as all the samples are good, they'll begin testing. We decided to go ahead and add on the aCGH testing for $2250, it seems crazy to go through all this to test for Fragile X, a developmental disability, and then not check for Down Syndrome or other Trisomy problems. I need to confirm whether they run the tests concurrently or consecutively, hopefully we'll have all healthy embryos and it won't matter, but if somehow they're all affected with Fragile X, they should hold off on the aCGH testing. We won't need to go there though, our embryos are going to be strong and healthy and we'll have a healthy baby before we know it.


Friday, October 24, 2014

Easy Peasy Fix and Oodles of Follies!

This morning was my stim day 4 appointment and we got surprisingly good news all around! Since Friday and Monday seem to be the clinic's busy days, there was a decent line for ultrasounds and blood work and I decided to go up to the financial office first. I hadn't received a call back from my contact yet but when I went up to her office she had already listened to my message and was ready to help.

As I already knew, everything on the estimate was incorrect. She took the aCGH testing off first since we are paying Reprogenetics direct and then corrected the third cycle ICSI to the second cycle price. I thought she might go back on her earlier statement about only paying the biopsy fee once but she didn't! She looked up the payment records, saw that we'd already paid it once, and took it right off the bill. I have to admit, I was impressed. I was expecting a lot more push back for what turned out to be a 5 minute conversation. Basically, I was working myself up, worrying about nothing. Whoops.


I would have just paid for the ICSI today since I had the estimate in hand, but our credit card company has helpfully decided to replace my card due to "potential fraud". As one might guess, the potential fraud they're referring to is my charge to IVFmeds.com, a charge that I had already spoken to a supervisor about and approved. This still wasn't good enough for them so I'm now waiting on a new card to come in the mail, and my old one will only work if they're swiping it directly, which neither SCRC nor Reprogenetics would do. Given the hassle, I figure it's better to wait and give them a card they can actually run.

With that all sorted out for the time being, E and I went down to my ultrasound and even more good news. Both my left and right ovary each had 6 tiny follicles, for a total of 12 follies after only 4 (really 3.5) days of stims! The largest on the left was 8mm with the largest right following just behind at 7mm. This means the follicles are well synced and will hopefully continue to grow at the same rate so they can all mature together. If you recall, I wrote about last cycles stim day 4 ultrasound here and I only had 8 follies visible at that appointment. I did an extra two days of suppression for this cycle so I'm not surprised these follies were a bit smaller but I certainly wasn't expecting to have an extra four right from the get go!

What I'm wondering now, is whether or not I'll have to stim longer than last cycle to give these follies more time to mature their payload. Are two extra days of suppression enough to require an additional day or two of stims? I already have to order a third cartridge of Omnitrope, with the adjusted dosage the two cartridges I bought will only last about 8 days and I'm anticipating needing enough for at least 11-12 days. I don't know if I'll get lucky enough to have Kaiser cover this last vial like the did the other two, but it would be seriously wonderful if they could.
Please order more things. I don't have enough boxes!
My next round of ultrasound/labs will be on Monday so in the meantime, I'll try to send lots of positive, growing thoughts to my follies. We want to keep them all growing nice and evenly so they're perfectly mature and ready to be fertilized after retrieval.

Thursday, October 23, 2014

The Financial Fuckery Begins

One of the main complaints I've heard about the IVF process is a distinct lack of communication between the actual IVF staff and the financial department. The financial departments of IVF clinics all over the country get slammed for poor billing practices involving incorrect numbers, screwed up payments and noticeably poor communication. Knowing this going in, I spoke extensively with the financial department for each lab/clinic we're working with and quadruple checked my numbers to try and head off any potential problems. I made a valiant effort but apparently it wasn't enough.

When I got home from work this evening around 8:15pm, I found this letter waiting for me from ART, the surgical center in my clinic.

Um, No.

As you can see, there are several mistakes. For starters, it lists my ICSI fee as being for a third cycle - this is only my second. I actually owe them $150 more than the bill says here.

Secondly, they want $3950 for aCGH testing. This is so far off that it's crazy. We did in fact decide to add aCGH testing on, but we're paying Reprogenetics directly and the fee is only $2,250. That's no where near 4 grand and there's no way I'm paying that to ART. All of our dealings with Reprogenetics have been direct, there's no reason SCRC/ART should have any part in fee collecting for them.

Their third and final strike is the $1650 for embryo biopsy. Here the number is correct, but we've already paid it. Before signing up with SCRC, I confirmed over and over again that the fee for embryo biopsy was once due once when purchasing their two cycle plan. As I've already paid them their $1650 when we did our first cycle, we will not be paying it again.

I'm hoping these were innocent mistakes but I admit it really cheeses me off. I went over this with all the different financial departments - SCRC, ART and Reprogenetics and I was so hoping we wouldn't get slammed with the usual financial fuckery. When our first cycle got billed correctly I thought we'd avoided any pitfalls but it looks like I got ahead of myself.  I left a voicemail for my financial contact at ART since it was way after business hours and I sent an email to my financial contact at Reprogenetics.

Your clinic and labs hold all the cards when you're doing IVF - they literally have your embryos, your potential children, the lab has my probe, and SCRC has over $20,000 of our dollars so it's not exactly like we can stamp our feet and refuse to pay if they won't fix the problem. With any luck, I'll get two satisfactory answers tomorrow correcting this estimate because there's no way I can give them another $6,600.

Tuesday, October 21, 2014

Our Probe Is READY!


Yesterday morning, I went ahead with my plan to phone Reprogenetics to get an update on our probe. I can never manage to catch someone at their desk so I left a message and waited for a call back. They're usually pretty good about returning calls and it only took a couple of hours for their New Jersey caller ID to pop up on my phone.

My rep for our probe process wasted no time in telling me that our probe is DONE! It's ready! We were originally quoted 6-8 weeks but it ended up being less than 4 weeks from the date they got our samples to the date of completion. I was so surprised, this is wonderful news :) I was anticipating a deadline closer to the 8 weeks and was worrying that we wouldn't get results in time to go right into a FET.

Once we conclude this cycle and the lab has received all our biopsy samples, it takes 15 calendar days to get PGD and aCGH results on our frosties.  Those will be two loooong weeks and I'll probably be going crazy but I know we'll get some good results.

http://www.acfs2000.com/assets/images/art_services/pgd1.jpg
(Source)
This is an example of Fluorescent In-Situ Hybridization, or FISH, a quick result type of PGD that we can't use for Fragile X but that is super cool to look at. This one is for muscular dystrophy. Embryo C is a normal male embryo, I believe the light pink is Y, the dark pink is X and since there's only one X in a boy, a single green dot for a normal chromosome. D and F are both normal female embryos, two green dots each, one for each X, the two dark pink dots. A shows a female carrier embryo, one of her chromosomes is affected but the other is okay, two dark pink dots and a single green dot, and B and E show affected male embryos, no green dots.

Hopefully we will have lots and lots of healthy embryos from both cycles but first we need a nice, big haul from this one. I just started up shots again today, this time 4 Menopur and Omnitrope in the morning and 4 Menopur in the evening. Every time I start up another cycle, I forget how much the Menopur burns!

Saturday, September 27, 2014

Day 5: TWO Frosties!

It's only 11am here but we've already had a crazy, stressful morning. My phone apparently rang at 7am but E and I were both sound asleep and I didn't hear it. Waking up 3 times a night to pee is exhausting -_- Then E's phone rang a minute later, and we woke up just in time to hear the end of the call vibrating on the night stand. Fully awake now, I jumped out of bed and recognized the number as belonging to the ART center currently in possession of our embryos. Our updates come from Dr. D at a different number so it was really unusual to get contacted directly by the lab.

I called them back right away and got a somewhat frantic woman on the phone - apparently they never sent us the correct paperwork to sign for PGD consent! They can't biopsy our embryos without this paperwork, we're holding up the embryos and she was worried we might be on vacation or might not have a scanner or printer and she wouldn't be able to get a hold of us. Ahhhh!

Luckily we do have a printer/scanner and we've been waiting on tenderhooks for embryo updates so there's no way we'd be far from home right now. She emailed me the paperwork straight away and E and I quickly signed and initialed another 20 pages, scanned them in and emailed them back to her. Phew. This was not the start I was hoping for this morning but I'm glad she caught the oversight in time.

Knowing that we now had at least one embryo to biopsy (!!!) I carried my phone around with me all morning until 9:30 rolled around and Dr. D called! He said that out of the 6 embryos at our last update, TWO were now hatching blastocysts that were being biopsied and frozen! YESSS!!! Two more are early blastocysts this morning so baring any problems, they should be ready to biopsy and freeze tomorrow! Ahh!!!  I know we're not supposed to count our embryos before they're hatched, but we have a very real shot of having FOUR embryos on ice to test!

Original Photo came from here

I am so, so excited for these embryos. There's a good chance that our baby could be one of those hatching blasts in the freezer Right Now. Now we need to decide if we should take a month off or start our next IVF cycle straight away with this upcoming period. It should be starting in about a week or so, maybe a little more or less. If there is any benefit at all to doing back to back cycles I am ready to go and I will stick myself with all the needles all over again. Dr. D said my OHSS symptoms, primarily the fluid retention that is causing all the discomfort, should start to go away when the trigger leaves my system which is about 7-10 days after taking it. Today makes 7 days so I should start feeling better in the next 3 days which is awesome. If there's any lingering discomfort, the 12 days of birth control should take care of it and by the time I start stimming again, I should be feeling normal.

I have heard before that there may be some benefit to back to back cycles and Dr. D seems to be leaning in that direction as long as I feel good. If that is the case, we're repeating the same protocol and I'll need to place my next order with IVFMeds.com straight away.

Please send good thoughts to my two little early blasts, they need all the positive vibes/thoughts and prayers they can get to grow up and hatch tomorrow!

Friday, September 26, 2014

Day 4: Acupuncture and Patience

Today, I'm finding it difficult to be patient. We don't get an update on our embryos and I know they're in the most difficult phase of growth where many embryos are often lost. Last we heard, four were doing very well with 7-8 nice, even blastomeres (cells) and two were growing nicely but a little slower with only 6 nice, even blastomeres.

On day 4, we need those embryos to be in the Morula stage, the last phase before they grow into blastocysts, form the blastocoel (fluid filled cavity) and start differentiating cells. Today, and possibly tomorrow if they're slow growers, they should have between 10 and 30 cells.  They might even have begun compacting like the embryo below, which is where the cells start squishing together like the embryo below.

Nice quality Morula
Hopefully they'll make it through the morula stage and grow into nice blastocysts tomorrow. If they're not quite there yet it's still okay as long as they're progressing. They'll be allowed to grow to day 6 when plenty of embryos are frozen and I probably won't sleep until we get the call. As blastocysts, they should be dividing into the inner cell mass (ICM), the Trophectoderm (TE) and the blastocoel (fluid cavity), which gets bigger as the embryo expands.

Nice Blastocyst
We need good cell differentiation to get a clean biopsy of the embryos for PGD. They need to sneak some cells out of the TE on the side there, the cells that will become the placenta, so we can test the fetal DNA for abnormalities.

Since there's nothing I can do to help my embryos grow, my distraction for today was a much needed acupuncture appointment. I haven't been since my retrieval and it's supposed to really help with recovery and the symptoms of OHSS. I laid down on the table, S took one look at my belly and said "Oh boy, you're definitely hyper stimulated". Clearly other people think I look 6 months pregnant too.

I already knew that I probably had OHSS but it's still a bummer to have it confirmed by a nurse. I also woke up sore this morning, my hamstrings and back felt like I'd worked out, and S said it's because of all the fluid I'm retaining. The fluid is responsible for my bloat, my repeated peeing, the heart burn and now the muscle soreness. Oh the joys of IVF.

Dr. D's nurse also called today to ask us about aCGH testing for our embryos and to see how I'm doing. I told her we'd probably base our decision for chromosome testing on the number of embryos we get, our lab doesn't really need an answer until they have all of our biopsy samples but as long as we get a good amount from each cycle I think we'll probably go ahead and add it on. If we only end up with a couple of embryos from each cycle, I'm not sure if it's worth doing, but if we get six lovely frosties each time I'd say it's worth the extra $2500.

As for next cycle and the crazy bloating, she said Dr. D usually takes a "flush" cycle in between IVF cycles to allow all the hormones to flush out of your system. It would also give me a good amount of time to order my meds from IVFMeds.com so I wouldn't be doing things so last minute. She made a note for Dr. D to chat with me about it tomorrow when he calls with our embryo update, so I'll probably be holding my breath until the phone rings tomorrow morning. I so, so hope our six embryos are doing well, I worked so hard for them and I won't be able to relax until they're safely biopsied and frozen.

Wednesday, September 17, 2014

Itchy Sitchy

Today was day two of adding in Cetrotide to my IVF protocol and I have to say it's not my favorite medicine. I've been pretty lucky to only experience a few side effects from the various meds but the Cetrotide is one of the most annoying.

Thus far, I've had:
  • Head aches -  I can't tell if these are from the Menopur/Omnitrope or from the insane heat we've been having. I've only had two that were really unpleasant and I'm trying to drink a ton of water in case it's the heat since I can't take Advil
  • Cramps - These I think are mostly from my period take two, the withdrawal bleeding you get after you stop birth control, but I've had twinges after every injection as well. They're more in my uterus than my ovaries so who knows what is causing it. My bet is on the Menopur. 
  • Numb toe - This one is definitely the Omnitrope. One small section of my right big toe went numb, it was the weirdest thing. I had no idea it was a common HGH side effect.
  • Sore joints - Again the Omnitrope. Mostly my right knee and it's only been a couple times, another common side effect.
  • ITCHING - ding ding ding, we've reached the Cetrotide! The Menopur burns while you inject it, but the Cetrotide itches for at least an hour after. The problem is the itch is under your skin so you couldn't scratch it even if you wanted to scratch a fresh injection site. Gah. 
Tomorrow is day 9 of stims and I'm hoping these follicles are going to be nice and mature at tomorrows appointment. We only needed 9 days of stims for our last IUI cycle and thus far these follies have been tracking my last cycle almost exactly. Plus, my belly is covered in track marks and despite it's ample and expanding girth, I'm running out of injection sites!

Our protocol now looks like:

CD 1: Nothing
CD 2 - 14: BCPs
CD 15 - 17: Nothing
CD 18 - 22:  600IU Menopur (2 injections), 0.25cc Omnitrope (1 injection) and 1mg Dexamethasone
CD 23 - 24:  600IU Menopur (2 injections), 0.25cc Omnitrope (1 injection), 0.25 Cetrotide (1 injection) and 1mg Dexamethasone

We also need to get the saliva kits shipped out for my mother and sister. They need to be over-nighted there which I'm sure will run us at least $50-$100, and means I need to get them collected and shipped on the same day. This has been a bit more difficult than you'd think since we need to coordinate three schedules and collect samples on the same morning. It's on my to do list for tomorrow so hopefully everything works out.

In the meantime, all my energy is directed at those 9 follicles maturing in my ovaries. Come on follies, grow, grow, grow! I need good, healthy, mature follicles at my appointment tomorrow.

Wednesday, September 10, 2014

Day Two of Stims!

Today was day two of my stim injections and I think I'm finally getting back in the swing of things. The first day was a little tough, I felt unexpectedly nervous and my heart was pounding in anticipation of the Menopur burn. It was pretty much exactly as I remembered it though, and by this morning it felt routine again.

Now that I've tried a few of the new medications for this cycle, I'm starting to get a feel for how everything works in practice. Thus far:


  • Omnitrope (HGH) - this is one bubbly sucker. The solution is really fragile, you're not supposed to shake it and it bubbles at the slightest provocation. This can be a pain in the ass but since I got the cartridge vials and not the 5.8 vial I'd have to mix like the Menopur, I'm not complaining. I have to draw it back and inject it with the same needle which does dull it slightly, and I do have a small bruise at my first injection site. I also have some heat and soreness at my injection site this evening but I can't tell if its from the Menopur or the Omnitrope since I injected them on the same side. I do morning injections (4 Menopur) on the right, and evening ones on the left (4 Menopur and 0.25 HGH). I might switch things up tomorrow and inject the Omnitrope on the right to give my left side a break.
The cartridge vial is so skinny, but you can still draw pretty well from the rubber stopper at the top.
  • European Menopur - I decided not to use the glass ampoules that came with the EU Menopur since I have a ton, like 5 boxes, of the sodium chloride vials left. I tried to give the Q-caps a shot and they do fit on the EU vials, but the rubber stopper in them isn't ideally shaped to extract all the liquid. I have to use the big mixing needles to get every last drop and it takes a bit longer to do. I also had a nervous scare when I combined cold sodium chloride with room temp EU Menopur powder and it turned instantly cloudy. Cloudy Menopur is supposed to be bad Menopur but since it cleared up after about 30-45 seconds, I deemed it okay.
You can see the hole in the rubber stopper is only in the center of the stopper, which means liquid can pool around the sides. The US vials have a long slit to better capture liquid from all sides.

I can already tell my belly is going to be bruised and poked and sore once this cycle is over. Three - four injections is a lot for a day and I'm going to run out of places to stick the needles since they all have to be injected in the same area. I can't rotate between belly, thighs, butt, etc, they all go into the same section of my lower belly. Owie. 

IVFMeds.com had good news, my second package finally shipped! It ended up going out two days later than it was supposed to which necessitated 2 more phone calls to customer service asking why I hadn't received tracking info yet. I would have liked it to go out sooner but if it travels like the first one did, I should have it in time. The customer service rep also said that if my medication didn't come in time, they'd reimburse me the difference between their cost and the cost of the vials I'd have to buy locally. It was a really nice offer but I'm hoping I won't have to take them up on it.

I also got a good convo in with Reprogenetics and they've put my blood and saliva kits into the mail. I have to send in a vial of my blood, a saliva sample from my mother and my sister, and a single premium IUI vial of our donor. They were originally requesting two vials (~$2,000) but their lab agreed we could go with one since these are really high yield vials instead of the low yield kind they'd usually be sent for PGD. That saves me an extra $1000 which is excellent, every little bit helps!

Thursday, August 28, 2014

The Wheels of Infertility Turn Slowly

It feels like I've been playing phone tag all day long. Making calls, missing calls, no one is ever in the office when I need to speak with them and they only seem to return my calls when I have to pee. Still, I did manage to get a few things done today:
  • Apply for Compassionate Care program and First Steps to get financial help.   
    • We were approved for the minimum amount, 5% and 10%, but I'll take whatever we can get.
  • Follow up with Reprogenetics. The billing manager needs a letter of agreement from Kaiser but the Kaiser lady has been on Jury Duty and then the billing manager went on vacation Friday to Monday. On Tuesday, both should be back in the office and I should get my letter. 
    • Still no confirmation of the letter. I tried calling a couple times today but had no luck. 
  • I need to order a very large amount of sperm. SCRC wants two vials, Reprogenetics wants two vials, and I'm thinking we should have another two on ice to ensure our donor remains available to us. That's 6 vials for roughly $5,000.
  • Meet with the financial adviser at SCRC to officially sign the paperwork and pay the nonrefundable $18,230.00 fee for our two cycles. As the cycles progress, we will pay separately for medication, ICSI (which is required for PGD), PGD biopsy (which includes assisted hatching) and our FET. 
    • I've got the forms mostly filled out, I just need to go over what is and isn't covered once more. They use really specific wording and I'm thinking they're going to make me pay separately for my two ultrasounds before stimms start, the mandatory ultrasounds that check if I'm suppressed and good to go.  
  • Submit the paperwork to Reprogenetics. I've been waiting on the letter of approval so I know what my portion will be. I think we're going to pay for the additional chromosome testing.  
    • I just sent off my paperwork. We decided to make up our minds about the additional chromosome testing once we know how many embryos we have. If we only get a couple, we'll skip it. If we get a bunch, like 10-14, we'll do it on the Fragile X negative embryos.
  • Send DNA samples from myself, my mother and my sister to Reprogenetics for the creation of our probe.
  • Hammer out a protocol with my doctor. Figure out what our plan of action is and decide how we're going to proceed. 
    •  I spoke with the doctor today and we're going with a very unconventional cycle. Since I had such a nice response to my last IUI, we're going to try and repeat that success. We're going with an all Menopur cycle with some growth hormone and cetrotide thrown in for good measure.  
  • Pay to have two vials of sperm shipped to Reprogenetics for the creation of our probe.
  • Pick up and bring two vials to SCRC and pay the $500 storage fee to have them stored there. 
  • Pick up and pay for my first round of medication.  
    • I did some more research on this and it's going to be PRICEY. The Menopur alone will be $5k per cycle, plus the HGH, HGC, Anti-inflammatory and everything else. It's going to be at least $6k per cycle.   
There's still so much to do and a lot is hanging on that Kaiser approval. I can't send in any of my DNA samples or proceed with Reprogenetics until they have their letter. I also need to call my doctor back, get him a copy of a test that was left out of my file and find out what dosage of certain meds they want me to look for so I can get a better price quote.

Monday, August 25, 2014

Decision Made!

After going back and forth a million times, doubting pretty much every aspect of our decision making process, making up our minds and then doubting things again, we've finally made our decision. I'm still not sure this is the right move and I feel a little sick to my stomach over the money we're about to spend, but this is it. Without further ado, we have decided to pursue IVF with....

Southern California Reproductive Center

Ultimately, I think SCRC and HRC would both be excellent centers. A part of our decision ended up being that I can't seem to get the billing department at HRC to call me back to discuss our Kaiser PGD coverage. I really liked Dr. Kolb and I think he would have been a good doctor. However, our PGD coverage will save us about $8,000 and I can't work with a center that won't accommodate that.  They said they'd be willing to work with me, no problem, but then never called me back. That doesn't seem to be a good start to such an important relationship and it played a part in us ultimately choosing SCRC. Dr. Danzer called me after our consult to see if I had questions and has replied to every attempt I've made to talk with him. He's definitely got the personal touch down.

SCRC is also a lot closer to our home than HRC. It will only take us 10 minutes to get to appointments and the staff has been much better about getting back to me. They have an excellent success rate with PGD and are considered a top center here in LA. We're proceeding with the same plan we would have gone with at either center and I officially started the suppression phase this morning. 

Going forward, we're proceeding with:

- The first freeze all IVF cycle with biopsy samples sent to Reprogenetics
- A second freeze all IVF cycle with biopsy samples sent to Reprogenetics
- PGD at Reprogenetics on all embryos 
- A FET with either one or two embryos

I'm hoping against hope that we get lots of wonderful, healthy embryos and that our first FET is successful. In the meantime, there's still a ton of stuff for me to do:

  • Apply for Compassionate Care program and First Steps to get financial help.  We were approved for the minimum amount, 5% and 10%, but I'll take whatever we can get.
  • Follow up with Reprogenetics. The billing manager needs a letter of agreement from Kaiser but the Kaiser lady has been on Jury Duty and then the billing manager went on vacation Friday to Monday. On Tuesday, both should be back in the office and I should get my letter. 
  • I need to order a very large amount of sperm. SCRC wants two vials, Reprogenetics wants two vials, and I'm thinking we should have another two on ice to ensure our donor remains available to us. That's 6 vials for roughly $5,000.
  • Meet with the financial adviser at SCRC to officially sign the paperwork and pay the nonrefundable $18,230.00 fee for our two cycles. As the cycles progress, we will pay separately for medication, ICSI (which is required for PGD), PGD biopsy (which includes assisted hatching) and our FET. 
  • Submit the paperwork to Reprogenetics. I've been waiting on the letter of approval so I know what my portion will be. I think we're going to pay for the additional chromosome testing.
  • Send DNA samples from myself, my mother and my sister to Reprogenetics for the creation of our probe.
  • Pay to have two vials of sperm shipped to Reprogenetics for the creation of our probe.
  • Pick up and bring two vials to SCRC and pay the $500 storage fee to have them stored there. 
  • Pick up and pay for my first round of medication. 

This is such a huge decision. After a lot of discussion we've decided to accept some of the offered financial support from our families. It makes me a bit uncomfortable but if it's what is necessary to have children, it's just something we're going to have to get comfortable with. 

Can you tell how nervous/anxious/ahhh I am? It's like a miniature tornado churning in my insides. I'm not actually worried about the process itself, I'm a pro at injecting myself and the retrieval is just another procedure for me, but I'm terrified that this might not work. I'm terrified we're going to spend $40,000 and not have any viable embryos to show for it. I'm terrified that E will get completely discouraged and we will be done. I'm terrified that maybe he's not ready after all, that he's feeling just some of what I'm feeling, even though we're in this together and he says he's okay. I'm terrified of failing and never having children.

The only thing I can do is cross everything I have, rub every lucky rabbit foot and Buddha belly I come across, project every good vibe/thought/energy I can muster out into the world and hope with everything I've got that my body cooperates and we are able to create healthy, viable, life.

Saturday, August 2, 2014

SCRC in the Running

Yesterday morning we had our consultation with SCRC, our other strong contender for our IVF clinic.  After we ruled out USC I thought we'd be going with HRC, since they came so highly recommended by my acupuncturist, but SCRC made a really, really strong case.

  • They do tons and tons of PGD cycles, about 35-55 per month, definitely over 500 per year, and their embryologist, who came to meet us personally, was fantastic. 
  • They use Reprogenetics about 95% of the time, and with day 5/6 biopsies, they have a less than 1% rate of inconclusive results - I don't remember if he said it was 0.4% or 0.8% but it was excellent. 
  • They use laser biopsy and biopsy in house
  • They're only 6-9 minutes from my house which means I don't need to spend an hour in traffic. This is a huge plus, I don't have to leave at 6am for my appointments!
  • They don't validate for their structure (negative) but there's a structure just around the corner that will give us 2 hours free.
  • The doctor doesn't do my monitoring ultrasounds himself, his tech does them and delivers him the photos and lab work. This is a negative since HRC promises that you get your doctor at every appointment but the tech was very nice and did an excellent job with my scan.
  • They would also recommend two cycles and batching our embryos, which seems like a good plan.
  • This doctor is of the opinion that when you know something works well, you should attempt to replicate it. Since I responded well to the 10 days of birth control and 8 vial Menopur cycle, he's inclined to follow a very similar protocol 
  • They're big supporters of FET and feel it's better to put the embryo back into as normal an environment as possible. I'd be doing a frozen, medicated transfer. 
  • Money-wise I'm trying to sort out where they are. There's some issue with billing since they usually bill on behalf of Reprogenetics and we'd need Reprogenetics to bill Kaiser directly. This will be a deal breaker if they won't let Kaiser pay for our probe because that would cost us a lot more money. Other than that, I think they're about $36k for two cycles, including meds, and one FET. Fairly standard among the clinics.
While there I had another AFC done and was pleasantly surprised to see at least 7 lovely antral follicles! It looks like the corpus luteum cysts are gone, though the simple cyst is still hanging around, tiny and unobtrusive on my left ovary.

If we're counting this as a new cycle, we have until around August 20th to make up our minds about which clinic we're going with. I have a call in to HRC to find out how many FET attempts are included in their package and the billing department at SCRC is looking into making our PGD coverage work. I'm really torn now, I think either clinic would be a good fit and there are some strong positives for each one. I have no idea how we'll make a decision!