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Monday, February 28, 2011

Got my TSH results. 1.090! anything under 3 is good. So I'm responding well to synthroid dose. :)

In other news -- no word yet from RGI that the genetic markers are ready. AF will be coming this week so the odds that we'll start the IVF cycle this month are getting slimmer and slimmer. Which I've come to terms with. I've been trying to focus on the good things about postponing the IVF yet another month -- I've been physically active to get my body ready for the procedures and (hopefully!) pregnancy (I've done cardio every day this week so far!); going to go to Mardi Gras celebrations and imbibe (not binge) guilt free; will start another stained glass project (because it involves handling lead, I don't want to do it while TTC/preg).  

Wednesday, February 23, 2011

more poking

Because there's never a dull moment when TTC -- even when the cycle doesn't start for 1.5 months. Today I got blood drawn to test my TSH levels (will get results probably tomorrow). Checking to see if I'm responding to the synthroid or whether they need to up my does (I'm on the smallest dose right now).

Went to Labcorps (after DH and I both had unpleasant experiences with Quest). I hate to jinx it, but it seemed way more professional than Quest. I was in and out in no time even though I didn't have an appointment. And the woman who drew my blood actually knew what the test was for (unlike Quest where they didn't know what any of the tests were which resulted in much confusion, delays etc).

I've been re-adjusting my expectations so that I no longer think I will start my IVF cycle when AF comes but rather will start in April. I'm trying to focus on the good side of the delay -- more time for my TSH and Vit D levels to get where they should be. More time to get in shape before getting preg. All these things are good. Means healthy environment for the baby/babies. And it means I can have a guilt-free bloody mary for Mardi Gras! :)

Tuesday, February 22, 2011

More waiting...

I'm feeling discouraged and frustrated today. We've gotten so many different answers regarding when my IVF cycle will start. RGI told us it could start next month and then they would do the PGD on the frozen biopsied cells once they had the genetic markers.  However, CCRM told me today that they won't do my calendar until the markers are ready! Which means I may have to wait yet another month -- starting the cycle in April. It doesn't make any sense to me -- the embies and the biopsied cells will be frozen. There's no need I can understand for waiting to do ER until the markers are ready. They can remain frozen until the markers are ready. I'd like us to go ahead and do ER ASAP so we can see if DH and I can even fert an egg. If we can't get that far, markers won't do us much good.

I'm also wishing they would have just told me up front that they would need the markers before they could make a calendar. Instead, Dr. Surrey told me that my nurse would make me a calendar right after our post-ODWU regroup. The nurse also then told me she'd get me a calender that week. And they knew then I'd be doing PGD. I feel like if they would have told me then I'd be waiting another month, I could have processed that, mourned the lost time, and moved on. Now I feel frustrated.

Friday, February 18, 2011

DHs records incorrect

OK maybe we should be a tab bit nervous about whether CCRM can correctly label our biopsied cells when mailing to RGI. We found out today that DH's results Dr. Surrey told us during our regroup earlier this week were wrong. A nurse had written in someone's else's results, not my DH's. So the original results were correct. DH's chromatin assay was fine -- no fragmentation. His two-hour speed is abnormally slow for some of his sperm. But he won't need to take any supplements and they wont' need to prep his sperm any differently from the usual protocol for our IVF.

Wacky.

Thursday, February 17, 2011

Everyone's at work to make us a baby!

My parents got their kit from RGI yesterday and will be mailing in their saliva samples today to help RGI develop the markers for my genes for the PGD.

Thanks again Mom and Dad!!!

Wednesday, February 16, 2011

Phone consult to discuss ODWU results -- check

Just had our phone consult with Dr. Surrey to discuss the results from all these tests and how they will impact our treatment plan.

Me: FSH 7.5 (awesome! I was so worried it was going to be high again); Estradiol 58 (a bit high but he's not worried about it); AMH 1.0 (low for my age which suggests low ovarian reserve); 17 baseline follies (awesome!); TSH 3.58 (subclinical hypothyroidism).

DH: turns out his 2 hour sperm rate was lower than initial rate but still normal. His chromatin assay results though suggest 15% fragmentation (i.e., the DNA is in sperm becomes fragmented once it leaves the testes).

What it all means:
Dr. S thinks it's too soon to know for sure why we haven't gotten pregs yet bc we have to wait until we see how it goes with the IVF during which they can actually see our embies, etc to see if there are problems with fertilization, division, etc. But for now it looks like there's a combination of little things -- DH's fragmentation, my low ovarian reserve. There's some data suggesting that women with subclinical hypothyroidism have lower pregnancy rates. He thinks it's probably not any one of these things but when you add them all up, it made it harder for us to get preg naturally.

How it affects our treatment:
I'm on synthroid to treat the hypothroidism. DH will start taking supplements to increase his antioxidant levels to help prevent fragmentation. As for how these results will impact our IVF -- Dr. S will be more aggressive with the stims given my AMH levels (get ready for crazy emotional hormonal me!) and they will use a different procedure to separate the sperm than their typical wash to prep DH's sperm. Otherwise it sounds as though we're all good.

Some interesting news -- looks like they probably won't have us go to RGI for the FET. When we had our phone consult with the genetic counselor at RGI (Dana), she mentioned that they would prefer to not do a 2nd biopsy at RGI to test for CF given that CCRM will be doing a biopsy for the CCS. Dana was concerned that two biopsies may increase risk to the embies so they were going to try to convince CCRM to do all the biopsying and then just send the samples to RGI for testing. Looks like they may be getting their wish. And my and DH's thinking on this is that if RGI is willing to turn away business (i.e., doing our FET) they must feel strongly that it's safer to do one biopsy than to do two. And if they feel that strongly, then we're happy they're getting their way. But the negotiations with CCRM's legal team is still underway so it's not definite yet.

This may delay starting our IVF cycle by a month (ah yes more delays -- IF treatment is truly a lesson in patience -- good prep for being parents I guess!) which puts the FET as late as August. But Dr. S said that "it's not as though you have one leaf left on your fertility tree" meaning that delaying one more month won't make a difference given my age, test results, etc.

I will be getting my calendar from my CCRM IVF nurse (Rachel) soon and will let you know the tentative plan when I do.

Tuesday, February 15, 2011

Serum delivered

According to FedEx tracking, my serum was delivered this morning at CCRM's lab! I'll call them this afternoon to check that it arrived in good enough condition to test. Assuming it did, this means we're on track for our regroup phone consultation with Dr. Surrey tomorrow morning to find out our treatment plan. So excited!!!

Friday, February 11, 2011

CD3 blood draw - check

Went to my local RE's office this AM for my CD 3 blood draw. The way it works with CCRM is they want to run the labs (for quality control. Which makes sense given that those of us from out of town are going to CCRM bc our local REs aren't working for us which suggests there's something wrong with the way they do things). So CCRM asks that we find someone locally who can draw the blood then separate out the serum. We then take the serum home, freeze it, and ship it to CCRM.

I'm nervous that I'm going to jinx it by saying this but the blood draw with the local RE's office went very smoothly. I was very happy that the nurse who drew my blood was the one that's my favorite there (she worked closely with us during the IUI's and was the one who gave me the CF test results -- and I think was crying for us when she did -- she's very sweet!). Having her do the draw made it much less awkward I think than if one of the other nurses did it. And luckily I didn't see my local RE there, so I got to avoid that awkward interaction on this trip.

So my serum is in my freezer. Because they don't accept Sat shipments, I'll ship it on Monday for Tuesday testing. I have regroup with Dr. S on Wed so I hope everything gets in on time. The regroup will be a phone consult in which Dr. S tells us his impressions based on our test results and will discuss our personalized (!)  treatment plan. So excited!

Wednesday, February 9, 2011

and just when I was getting down, some good news

AF came today!!! Why is this exciting?!? It means CD3 is Friday so we can go to our local RE for the blood work rather than having to try to explain to the less-than-helpful people at Quest that we need the blood drawn and spun to serum but not run through testing (as we'll freeze the serum and ship to CCRM for testing). And my local RE's office is willing to do the whole serum thing. Yay and yay!

Strangely, my local RE's office also won't do my SMA carrier test either (nor would Quest or Labcorps). Seems it's perhaps a southern thing or a weird thing with my city/state that they won't do this particular genetic test. Weird. So I'll see whether CCRM can use my serum to test for this as well.

But now is not for dwelling on what my local RE won't do. Now is for rejoicing that AF came today and not tomorrow. Who would've thought when I started this process that I'd be rejoicing when AF came?!? Ah how things have changed.

Once again disappointed with the non-CCRM medical community

A big thanks to AnnieP for suggesting we find out if local RE will do blood draws etc on weekends.
For Saturday appointments they will see us if they are coming in anyways but will not make special arrangements to come in just for us.  We would need to call week of to see if they will be willing to see us on a Saturday. Jerks. I mean we're still paying them for the service. And they have made a crapload of money off us from our SEVEN IUI's. 

So I worry this means we may still need a back-up in case we need blood draws and u/s's on weekends during the IVF cycle. And if we have to go someplace else as a back up, why see my out-of-network local RE who won't even see us on weekends?!?

I was warned that prepping for ER would become a full-time job. What I wasn't expecting was that IVF planning would become a part- to full-time job before the IVF cycle even started! We've spent so much time on the phone trying to find out why test results haven't been sent to CCRM, find someone to draw bloods, do u/s's, etc. It's been incredibly frustrating. My cognitive restructuring is that this will only last a few more months and hopefully all the hard work will pay out in the end...

Tuesday, February 8, 2011

It may take a village to raise a child, but it takes 4 states (LA, CO, IL, OH) to make ours

We had our RGI phone consult today. Very informative. Got a better sense of the timeline for the FET. RGI would actulaly like two cycles before I start meds to prep for the FET. So we're looking at June or July for FET. I'm very disappointed this keeps getting more and more stretched out. Seems like our "IVF cycle" will go from January (CCRM phone consult) to July-ish. There's one h*ll of a long cycle!

But cognitive restructuring -- doing it right takes time.

So here's what we learned. Long story short, they have received my and DH's blood. They can now start mapping our genes. They also want a semen sample from DH to help with the mapping and oral swabs from my parents to help map my genes. My wonderful parents have agreed to provide said samples. I'm now trying to think of ways we can involve everyone in the making of our babies! :)

Luckily no one has to go to Chicago to do any of this testing. Samples can be collected at everyone's home and shipped to RGI.

More good news - RGI doesn't want our embies to be biopsied twice either. They've been really encouraging CCRM to do the CCS and PGD biopsies at CCRM and then just ship the biopsied embies and samples to RGI for testing and FET. Although there's no data RGI knows of suggesting that biopsying 2x will dramatically increase odds of damaging embie, they'd prefer to not take that chance if they don't have to. They said they hope to hear by end of this week what CCRM's verdict on this will be.

In other news, my Vit D test came back a bit low (not surprising). So I've been prescribed 1,000 of Vit D in addition to my prenatal so that my body is as healthy as possible for pregnancy should we get to that point.

Monday, February 7, 2011

Local RE will do our bloodwork and u/s!

Great news! DH called our local RE today and they agreed to do our ultra sounds and blood work during our IVF cycle! After all the problems we've had trying to get bloodwork done by our local Quest, DH's GP, and my OB-GYN, this is wonderful news. We can now rest a bit easier knowing we won't have to work so hard to get people to do things for us in the quick manner necessary during IVF treatment, given our RE's office is set up to respond quickly during IVF cycles. Whew!

No news is good news

No more updates to report. We have a phone consult with RGI tomorrow to find out more about how the PGD and FET will work.  Cross your fingers for us that prepping for the PGD won't further delay when we can start our IVF cycle.

We have a regroup meeting with Dr. Surrey on Wednesday to find out his thoughts on all our test results which I'm very excited for.

Will keep you posted on how those go.

Thursday, February 3, 2011

No updates yet

For those of you stalking the site to see if there are any new results in today (and I love you for it!) just wanted to let you know the answer is no. No new news. Other than that no labs in this city are willing to do my SMA carrier test. Seriously. Quest called CCRM and told them no they won't do it. Labcorps won't do it either. Weird. So if I want it done I may have to see my local RE who we still haven't told we're going to CCRM. But the more I'm dealing with labs and other docs here the more I'm thinking that it may be easiest to coordinate my local care with my local RE (it took my OB-Gyn's office three days to return my call asking whether they do same-day blood tests. That will obviously not work). Assuming he'll do it. Luckily DH has agreed to be the one to make that phone call as I want to be as separate from it as possible. I'm dealing with enough right now. Not that DH isn't but the scales are not balanced in terms of the procedures (and sacrifices! ah alcohol, how I miss you so...) so negotiating with the local RE will be one of DH's procedures.

Wednesday, February 2, 2011

Hypothyroidism?!?

OK the info keeps pouring in. Turns out my somewhat high TSH test was enough to prompt Dr. S to prescribe me meds to try to get my thyroid on track. I'll start taking meds tonight. Will be re-checked the week of 2/23 to see if I'm responding to the medication. The meds are safe in pregnancy so they will want me to stay on them through pregnancy should I get pregnant. Wacky.

It's so nice to finally be getting some answers as to why we haven't gotten our BFP yet! Although it's scary to find out things are wrong it's reassuring to know what those things are and how they can be treated.

oh how I love CCRM!

More test results in

OK another update. Some more of my test results are in. The only abnormal is my TSH level (has to do with thyroid functioning) -- it's slightly elevated which can affect pregnancy success. My nurse is going to check with Dr. S during rounds today to see if they need to put me on Synthyroid to treat this.

Still some other tests results out there so I will keep you posted.

I'm going to try to create a space on my site that lists all these results so there's a comprehensive place to see what we're learning about ourselves to make it easier to read...

Ah...the rollercoaster....

Things have been going so well with CCRM that I let myself forget that IF treatment is a roller coaster of emotions. And we were riding high for a a bit too long it seems. Our roller coaster has a few bumps -- we got good news and bad news today.

Bad news is that I was under some delusion that we would be able to start my IVF cycle when AF comes mid-Feb. This would mean FET in May so the process would be from Jan (consult) to May/June (preg test). I just found out from my CCRM nurse that they won't actually write my treatment plan until CD3 which means treatment won't start until mid-March, meaning this process drags out another month. I was expecting to get started sooner than this so am very disappointed and need to do some mental adjustments re: my expectations etc.

Annoyingly Quest didn't send in my test results to CCRM yesterday (after promising they would) so I have to follow up with that. And my GYN's office didn't send in mammogram results (after promising they would).So I have to follow up with them. But I guess I don't have to do it as urgently as I thought given the cycle wont' start until a month after I thought it would.

Good news - some of my test results came back. Anti-sperm antibody test negative. My AMH is a little low (mine is 1.0 and they like it to be at least 1.1). So some indication of low ovarian reserve. But my nurse doesn't think this will compromise my chance of success esp in light of my 17 baseline follies. Oh and I don't have any STDs (no shocker there). Also the cramping and spotting I'm experiencing as a result of my hystoscopy are normal which is comforting (although still not comfortable).

Will keep you posted...

Tuesday, February 1, 2011

Co Trip Recap

Garden of the Gods
I apologize for the short blogs while in Co. My mobile option is to text blog entries so I'm limited by the number of characters allowed by text.

Here's a brief summary of the trip:
Friday 7:30AM - 4:00PM: An entire day of meetings and testing at CCRM. And it was non-stop! We almost missed lunch because we had so many meetings and tests. The meetings included meeting with my RE (Dr. Surrey) so that he could answer any questions we may have had since our phone consult. We asked whether we could have the FET at CCRM given CCRM is in-network for me and RGI isn't. No dice. FET at RGI it is then!

Garden of the Gods
We also met with a genetics counselor who explained how they will coordinate with RGI. Also explained that since we want to do CCS and PGD, the blasts will be biopsied twice -- once at CCRM to do the CCS. Then any genetically healthy blasts will be shipped to RGI for the PGD.

I had an u/s to make sure there were no uterine abnormalities that may interfere with blasts ability to implant. I also had a test where we got to listen to the blood flow around my uterus to make sure I don't have high or low uterine BP. It was very cool to both get to see my uterus (they had a big screen TV facing me and DH so we could see everything) and to hear my blood pumping! And happily all tests were normal. Interestingly, it looked like I had just ovulated. Which is interesting as I'm not on any meds so it suggests I can in fact ovulate on my own. Not that it matters anymore given we've decided we will never try to get preg without IVF and PGD but still it felt good to know that my body is working right at least some of the time.

During the u/s, they also counted my follies. This gives them a sense of how many follies I'm capable of making each month. They saw SEVENTEEN! This is very exciting because it means that we have a greater chance of having some fertilize and that some of those will pass the CCS and PGD tests. So cross your fingers for us for when we do the IVF that most of these develop.

They also did a trial transfer which allowed Dr. S to also look at my uterus to rule out abnormalities (all looked good). However, this test continues to haunt me. He opened my cervix so he could pass a tube through there with a camera so he could actually see my uterus. It wasn't comfortable but it was manageable. But wow I continue to have mad cramping. Last night I awoke at 4:30AM in such pain I thought I had screwed up my antibiotics (to prevent infection given there was scraping etc while in there) and was going to need to go to the hospital. So here's hoping this heals up quick so I can finally catch up on my sleep.

Red Rocks Park
We haven't gotten as many test results back as I thought we would by now. DH doesn't have any STD's (no shocker there). His SA results were mostly good as I posted earlier -- his numbers are very high and morphology and mobility good. The only test result that came back somewhat low for him was that test sperm speed when they place in the dish (it was good then) and again 2 hours later. Turns out DH's boys are sprinters not marathon runners as his two hour test results were slow. So this may at least partially explain why IUI's and trying naturally haven't worked. Which is exciting. Wouldn't that be great if that's been our problem all along?!? Because this problem is totally fixable by IVF as we're getting ICSI (because of the CCS and PGD). ICSI is where they will inject a healthy looking sperm directly into the egg. So speed won't be an issue. Let's hope this is our problem!

In addition to the 6 vials of blood I gave at CCRM Friday I gave another 12 this AM locally to test for some things we can do here and thus covered by insurance. Should get the ones I did today back today although this is just CBC etc so won't reveal anything new. Oh and my mammogram was normal so we're good to go there.

Once we get the results from our blood tests, we can schedule our cycle. I'm biting my nails because on Friday they informed us that they are almost totally booked for the next couple of months so we may have to wait :( I don't want to wait so I'm hoping to get results back in time to get penciled in to start when AF comes in a couple week.

The other issue is insurance. Turns out that CCRM's lab isn't in network. We knew this going into this. What we didn't know was just how much of an IVF takes place in the lab versus in the clinic. So we're actually going to end up paying much more than we thought we would. We can swing it but we were definitely not prepared for that news! Because RGI is also out of network for us. And CCS and ICSI aren't covered by insurance as they are experimental procedures. So we're looking at $10,000-15,000 out of pocket. Will hopefully get reimbursed for some of that though so I'm not complaining just sharing.

Dinner at Buckhorn Express (yes it was a meat fest)
So we didn't go skiing but opted to do free things around Denver/Co Springs to start saving our pennies. The pictures are some of the sights we saw while there. We also went to Buckhorn Express Friday night to celebrate that we had our one day work up! Not surprisingly given the decor, there was not a vegetarian option on the menu so it was truly a meat fest. But a fun way to celebrate. We went to Garden of the Gods and Red Rocks Park, both of which were very cool. We also had a lovely dinner with a friend from high school. It was so good to see her and to meet her family.

I'll keep you posted on test results and scheduling. Keep on sending us those good, healthy vibes and good scheduling karma!