So Much to Catch Up On

I have been so busy this past week and haven't had much time to blog even though I have wanted to on a number of occasions.  I have a bunch of things to post about including my NIAW experiences, our follow-up appointment with the RE, test results we received today, and acknowledging the first award I received from Jen at the Chronicles of Violetta Margarita for which I am so appreciative!  I hope to be able to write more this weekend and to be able to catch up on everyone else's news from the past few days.

I'm a ICLW Virgin

Welcome, April ICLWers!  Thank you for stopping by to visit and say hi.  I finally started blogging last month after years of lurking while trying to cope with my own fertility struggles.  This is the first time that I am participating in ICLW and I look forward to visiting many of your blogs this week.  You can see a timeline of our TTC journey to the right.  We only recently shared our fertility struggles with our family and friends and I'm contemplating going public during NIAW on Face.book.  We just experienced our third loss on March 25 and will be going to a follow-up appointment with our RE tomorrow.  I've been compiling a list of questions I'd like to ask including quesitons about moving onto IVF as a potential next step.  I'd really welcome any suggestions you all may have for questions I should ask that I might not be thinking of at this point.  My husband and I want to make an informed decision before we pursue IVF as an option . . . especially since we've conceived and miscarried three times already.  I guess I'm just not sure how IVF would improve our chances of preventing another loss.  Any thoughts, suggestions or experiences you are willing share would be greatly appreciated!! Also, if anyone visiting has been diagnosed as heterozygous MTHFR C677T after experiencing pregnancy loss/losses, I'd love to hear if, and how, you were treated. Happy ICLW!

What the MTHFR???

So in preparation for our upcoming post-(recurrent)miscarriage follow-up appointment this coming Friday, I requested a copy of all of my medical records so I could review them in advance.  The receptionist told me that I would have to pay $2 per page since I wasn't requesting the records to be transferred to another physician.  After the money we've already spent, what's $2 per page at this point?  I told her I didn't care and that I wanted the records at least 1 week before our appointment so I would have enough time to look them over.  The records arrived about a week ago with a highlighted notation that said "**no charge**".  I guess they must have felt bad for me and decided to cut me a break or something.  However, they didn't include copies of any of the records they have that were transferred from our former clinic so I guess I will need to request those separately.

As I was reviewing the records, I was pretty annoyed when I came across a lab report from the initial bloodwork I had done in November after my second miscarriage which indicates that I am heterozygous for MTHFR C677T.  This was news to me.  No one told me about this and I bet I still wouldn't know about if I hadn't requested my records.  I've since done enough Google research to know that this particular mutation may or may not have something to do with my recurrent pregnancy losses depending on whose medical opinion you choose to believe.  Based on the fact that my RE never shared this particular result with me, I'm assuming he thinks that this mutation does not play a role in my miscarriages.  And, actually, if I'm understanding everything I have read thus far correctly, it isn't the mutation itself that is exactly problematic; rather it is just an indicator that I might be prone to having elevated homocysteine levels which are known to be associated with clotting disorders.  From what I can tell, my homocysteine levels have never been tested.  I will definitely be requesting further tests in this regard when we meet with our RE on Friday and also asking him why he never shared this information with me before.  I also learned that elevated homocysteine levels have been linked to cardiovascular disease which makes me wonder if this could also be the cause of the consistently high cholesterol levels I've had my whole life despite being a relatively athletic and fit person.

Maybe this isn't the answer, but I am holding on to a tiny bit of hope at the moment that it is and that once it has been identified as a potential problem that we will be able to address it in some way that will help me carry a pregnancy to term.

Any other RPL veterans out there who have had experience with this MTHFR-ing gene?  Which mutation did you have?  Any success stories post-diagnosis and treatment?  I'd really love to hear about them so I can be prepared to ask my RE some very specific and pointed questions on Friday.

Adding Insult to Injury

Nothing like getting an EOB from your insurance company in the all-too-recent wake of your third miscarriage that reads a little something like this:

Date of Service: 3/25/2011 (click here for a recap)

Type of Service: Anesthesia and Outpatient Physician

Total Charges: $1,449

Plan Allowance: $0 (that's right - nothing, zero, zilch, nada, big fat goose egg)

You Owe Provider: $1,449

What on earth could be the basis of the denial, you ask?

"Benefits are not provided for services, drugs, or supplies that are not medically necessary or related to ABORTIONS.  You are responsible for these charges even if the services, drugs, or supplies were ordered by a provider."

Yep, that's right people, my miscarriage has been equated to an elective termination of my pregnancy.  I know that this is probably just a coding error on someone's part, but we really don't need to be dealing with this absolutely insensitive mistake right now.  Thanks for rubbing salt in the wounds.

Opening Up About Our Fertility Struggles

Before our most recent miscarriage, only a handful of people in our life knew about our fertility problems including a few close immediate family members, my best friend and a couple of co-workers I gave some limited information to when I needed people to cover for me at work so I could go to appointments that were never easy to predict.  Back in August, after reading this article published in Self magazine, we drafted an e-mail we considered sending to family and friends.  At that time, we were approaching our tenth anniversary and seemed to be fielding lots of questions about if and when we were planning to have kids.  Also, I had sent a letter to the editor of Self to tell them that I was happy to see that they addressed this important issue, but was disappointed that the article wasn't highlighted, or even mentioned, on the cover (especially since the whole point of it was to break the silence of infertility).  I was asked to provide my full name and place of residence because Self was considering my comments for publication.  I have an uncommon last name and, if my comments would have been published, I was concerned that people in our lives would learn about our fertility problems in a very impersonal way if they somehow happened to see my name in the magazine.  As it turns out, Self never published my comments.  If they would have, we were going to send the e-mail we drafted to a wider circle of relatives and close friends as soon as we saw my name and comments in black and white.  But we returned from a wonderful vacation to celebrate our anniversary and found out I was pregnant shortly thereafter.  With this new pregnancy, we decided to hold off on sending the e-mail and keeping our struggles private a little longer. 

After we lost this second pregnancy, we decided to switch clinics.  We continued to keep our struggles private while we attempted three more IUIs with the new clinic.  IUI#5 (the second one with the new clinic) resulted in another pregnancy and our most recent loss.  After this loss, my husband and I decided it was time to share our problems and losses with others.  It is just getting too hard to keep it a secret anymore.  I'm tired of dodging the questions about kids and starting a family.  So I pulled out the e-mail we wrote in August, revised it a bit to include more updated information and hit the send button about 48 hours after our last miscarriage.

I'm so glad that we sent it. Sending the e-mail felt liberating.  It felt like the right time to finally "out" ourselves.  I felt like I got rid of a huge weight I had been carrying around.  We sent the e-mail to about 30 people and have been overwhelmed by the responses we received.  No one has made any insensitive comments even though I actually expected to receive some.  We've received amazing responses from handwritten cards to two completely unexpected and generous offers from friends who said they would be willing to explore the option of surrogacy with us if that is the path we decide choose.  I don't know why, but I have been stunned by the love and support we have received.  I really shouldn't have expected anything less.  After all, these are all people who love and care about us.  We are truly blessed to have such an amazing support system and I am glad that we will be able to confide in, and rely on, these relatives and friends from this point forward if and when necessary.

I wasn't quite brave enough to post something on Facebook yet, but with National Infertility Awareness Week approaching, I think I will muster up enough courage to "go public" with some type of message.

While I don't want to post the e-mail we sent in its entirety here, I am more than happy to share it with anyone who is contemplating coming out to family and friends and would like to see how we finally did it.  Just e-mail me or leave me a comment with your e-mail address and I will forward the message to you.