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Thursday, December 30, 2010

Just sent in our new patient paperwork to CCRM! The process is beginning! So excited!

Saturday, December 25, 2010

Happy holidays!
sorry I haven't posted much lately. Have been distracted with the holidays. I will probably be MIA from blog until our Jan. 7th phone consult. Check back then.

Sunday, December 19, 2010

CCRM

Good news! I found out from some women on one of my message boards that they too are out-of-state patients at CCRM. They had their initial phone consultation with CCRM and were scheduled for their first in-person appointment the next week. So looks like things may happen quickly once we have our phone consult in Jan (we were worried there would be a wait-list).

Friday, December 17, 2010

Why am I making such a big deal over the decision to seek out-of-state treatment?

Recently a friend suggested I stop worrying about whether to go to CCRM and just go. I know she was saying this to support our decision to get treatment from CCRM. But her comment made me stop and wonder why has the decision to seek out-of-state treatment been something to worry about?

To me, it's because having to seek treatment out-of-state suggests that we have a real problem. That our IF problems are so serious that no doctor in-state can help us. In other words, we're so broken that we have to be seen by the very best if we hope to get pregs. It means our problems are very real and very serious and very scary. I'm not saying this is all 100% true/accurate but I think that's how it's been feeling to me.

So DH and I are needing some time to wrap our heads around that. It took some time early last year (when we started IF treatment)  to mourn that we couldn't get pregs naturally. Last month we needed some time to mourn that DH and I are both CF carriers so it's probably safest that we don't ever even try to get pregs naturally so that we can strive to have a healthy baby (and every time I even say/write that I feel terrible because I know people with CF who are wonderful so I feel just horrible about decisions such as seeking PGD to maximize our chances of implanting non-CF babies). Now I think I'm mourning because we're no longer a "simple" case of unexplained IF.

I know that once I mourn this and DH and I come to terms with CCRM being the best option for us, we'll be back to our usual, strong selves. We've done so at every other step in this journey. In the meantime, I appreciate the patience and support of my wonderful friends and family who've listened as we've talked this through.

Suggestions for how to support loved ones battling with IF

This is a great article from Resolve with suggestions for how to support loved ones battling with IF. It explains some of why IF can be such a difficult journey as well as some do's and don't's for how to help loved ones suffering from IF.

http://www.resolve.org/support-and-services/for-family--friends/infertility-etiquette.html

Tuesday, December 14, 2010

Met with couple who had IVF with local RE

DH and I just met with the lovely couple who is now happily pregnant via IUI with our local RE but who had failed IVFs with the same RE. In retrospect, they are less frustrated with RE than they were when going through it. But they both enthusiastically endorsed us going to CCRM or Houston. Their thoughts were similar to ours -- if we can go with the best and try to minimize our chances of further IF then why not. And although they too think our RE is a very nice man who is definitely interested in getting us pregnant, they did have some very big disappointments during their IVFs with him (I won't go into details because it's not my story to tell but there were some definite hardships along the way). Anyway, in a nutshell even though it worked out for them in the end if they could do it all over again, they said they would have gone to out of state clinic sooner.

Done and done. I'm convinced. Will look into scheduling consult with Houston clinic as well so we can explore our options.

One thing that I have found just absolutely amazing during this entire process is how supportive people have been. No one expects to be in the IF club. But once I found myself a card-carrying member, I realized that not only is the club not as exclusive as I thought it would be (more people than I realized are/have also struggled with IF) but it's a very tight-knit club of men and women who care for each other, take care of each other, support each other, share info with each other, etc. Here we were tonight, asking these people we barely know intimate details about their attempts to get pregnant and they were very happy to share whatever info they could, offer whatever advice they could, and provide words of comfort and support. It was wonderful.

I'm so thankful to them (and to all the other IF club members we've talked to so far) for being so open, strong, honest, vulnerable, supportive, sharing, and caring. Each and every one of the IF club members I've spoken with has just been wonderful role models for us through this process. I don't know how we would've gotten this far without them.

CCRM consultation appointment made!

My wonderful friend who has been an out-of-state patient with CCRM made a pretty compelling argument for us doing a consult with CCRM and the Houston clinic. DH and I discussed at length last night and here's what we've come up with for reasons for out-of-state treatment:
(1) I'm no spring chicken. I'm 35 and only getting older. Now usually I don't get at all down about getting older (you know I love being in my 30's! and for sure the older I get the wiser I've become) but the reality is that it's only going to get more and more difficult to get preggers as I get older. And we're currently dealing with "unexplained infertility" that probably has nothing to do with our CF carrier status. So it may not be the best idea to do an IVF cycle with my local RE first then move on tot he experts if that doesn't work as that could set us back months, by which time I'll be 36...

(2) traveling during an already stressful time (IVF cycle) will add stress, sure. And the costs for last minute flights and hotels will add up. But the out of state clinics are in-network (and our local RE is not) so the money we would pay as co-pay for our local RE can go towards flights, hotels, etc. And traveling to Co could be fun -- I haven't been as an adult and DH has never been. And we have friends in the area we could hopefully see. Same with Houston.

(3) if  IVF #1 doesn't work we'll be much more upset with ourselves if we go through all that with local RE. If we're at CCRM or Houston, we'll at least feel like we're in good hands. If we're with our local RE, we'll just loose that much more faith in him.

So I went ahead and scheduled an initial consult with Dr. Surrey at CCRM!!! The appointment isn't until January which means more waiting. But hey being a member of the IF club means becoming an expert in waiting, right?

In the meantime, DH and I have dinner scheduled tonight with the couple who did an IVF with our local RE and who also looked into CCRM and Houston so we're very much looking forward to hearing about their experience with the local RE as well as which Houston clinic they recommend, how they picked one (there are several in Houston--unlike here where we have 1 RE for the entire city).

And this AM I went to spin class for the first time since starting the terminated IVF cycle (it's recommended that one not do vigorous exercise while doing an IVF cycle). I didn't realize how much I missed it until I was there. So I can look forward to working out again while waiting.

Monday, December 13, 2010

another red flag...

So my RE's office called this AM to see if I wanted to schedule CD 3 blood work for doing an IVF cycle starting next month. I informed the nurse that called that we were waiting to hear from our RE before deciding whether to do an IVF next month as he was going to look into whether we need to do blood work to map our genes for the PGD prior to IVF. Given this mapping can take 6-10 weeks the plan would be that we would wait to do an IVF once our genes were mapped. The nurse had no idea any of this was going on so said she'd call back once we found out what was going on.

In the meantime DH called our lab guy to find out if we could get an in-network lab to do our PGD. The lab guy told DH he was glad DH called as they were waiting to hear from us to see if we wanted to move forward before they did anything. What what what?! We were waiting for them to call us with an idea of whether we needed the genetic mapping since they have already ID'ed our CF variants.

All this mis-communication is clearly a bad sign...

In good news, the friend of my friend has agreed to talk with me about her IVF experience with my RE so hopefully I'll get to talk with her soon as I think that may seal the deal for us to look into CCRM.

to seek out of state IF treatment?

The meeting with our RE in which we found out that he only does 2-3 PGDs per year and has never had a couple in which both are CF carriers worries me. That, combined with the fact that he didn't even test us for CF carrier status until the IVF (and after 7 IUIs!) makes me worried that he may not be the best RE for us.

I luckily have a wonderful friend who has shared a lot of info regarding her experience going to CCRM in Colorado. CCRM has some of the best stats in the country and is consistently rated the #1 IF clinic in the U.S. And they have a lot of experience with out of state patients.

And the great news is that they are in-network for us!!! Which is huge. We know we are very lucky that our insurance covers IF treatment but couldn't believe it that CCRM is in our network. Their lab isn't and the costs to travel to Co wouldn't be included but still. To work with REs who know what they're doing and have expertise in dealing with genetic issues. It's very tempting.

I'm hoping to talk with a friend of a friend here in town who had an IVF with our RE to learn more about her experience. And if it's as bad as I remember from talking with her about it previously, I think DH and I will seriously consider CCRM. Will keep you posted...

If anyone has experience with CCRM or out-of-state IF treatment, I'd love your thoughts on this!

Friday, December 10, 2010

Introduction - our TTC journey thus far

Hi! I'm starting this blog as a way to help me cope with the trials and tribulations associated with TTC. So I thought I'd start with a bit of background. DH and I have been married for nearly 5 years. We've been TTC for over 1.5 years. Neither of us has any children or any prior pregnancies.

Early on, though, we realized that my luteal phases were short (determined through temping and tracking as suggested by Fertility Awareness Method - a book on which you can find here:

http://www.amazon.com/Taking-Charge-Your-Fertility-Anniversary/dp/0060881909/ref=sr_1_1?ie=UTF8&qid=1292015357&sr=8-1). Oh, am I also suffer from "old age" in the land of TTC - I'm 35.

My OBGYN suggested Clomid, which we used for one month - BFN.

We then started treatment with our RE. We've had:
4 IUI's with Clomid and HCG trigger shot - all BFN's.
3 IUI's with stems and HCG trigger shot - all BFN's.

We were going to start our first IVF cycle last month. In preparation, my RE tested me to rule out CF carrier status. But I tested positive. As did DH, which my RE was not expecting given the rates are so low. Rates are so low for both partners as carriers, in fact, that my RE has never had a couple in which both were CF carriers. DH and I are the first.

So first IVF cycle was terminated after 1.5 months back on BCP but just before we were to start stims.

We've met with a geneticist who explained the genes side of it all to us. We've met with our RE to find out how our CF carrier status will impact future IVF cycles. Basically, RE will now try to get as many follies as possible (aiming for 15-20) to get as many eggs as possible to try to get as many embryos as possible. We will then have PGD to try to ID embryos that do not have CF (i.e., those embryos that have either no or just one copy of the CF mutation) so we can implant only those embryos that won't have CF (i.e., two copies of the genetic mutation).

My RE has very little experience with PGD, only doing 2-3 per year. So they will bring in an expert to do the biopsies and then take the samples to an out of state lab for testing.

So that's been our journey thus far in a nutshell (without descriptions of the emotional journey associated with this rollercoaster ride).

We're now waiting to hear from our RE whether we can start an IVF cycle when I start my next cycle (end of this month) or whether we need to wait and do mapping of our genes for the PGD.

I'll keep you posted...

Any words of support, advice on PGD and/or IVF, etc are very welcome. I'm also happy to answer any questions anyone may have about any of this.