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.

"You're right, I don't have any idea."

I returned to work on Monday after our loss on Friday.  The loss that my RE described as a "dramatic miscarriage" because of all the blood I lost and the large clotting that went along with it.  I spent most of Friday, Saturday and Sunday just lounging around the house.  My husband and I watched the first two seasons of Weeds with Net.flix on demand.  I could have called in sick and stayed home, but I wanted to go to work so I could think about something else, to concentrate on something other than our third miscarriage.

I fielded a call from someone that morning who was calling to inquire about the status of a certain case.  I'm not particularly fond of this person in general, but I am always professional and cordial when I speak with him.  He started the conversation with the standard, "how are you?" I responded, "I'm okay, how about yourself?"  You know this type of conversation -- asking about a person's well-being as a formality even though you don't really give a crap, but you feel obligated to do so before proceeding onto the real reason for the call/conversation.  He could have just said "fine thanks" and moved on, but of course that is not what happened.  Instead, he said, "It's a little crazy over here.  My wife is out of town this week and I have a lot going on."  I replied, "I guess that could make things a little more hectic than usual."  And then he said, "With an eighteen month old, you have absolutely no idea."  I couldn't resist and my next statement was, "Unfortunately, you're right, I don't have any idea." That was greeted with a noticeable few seconds of complete silence on the other end of the line which was then followed with "so the reason I'm calling is . . . " 

I hope my response made him uncomfortable.  I'm proud of myself for actually saying what went through my head out loud for once.  I'm not sure where my courage to say it came from.  Maybe it had something to do with my general dislike of this person and his comment rubbing me the wrong way on my first day back to the office after my third miscarriage.  Maybe it is because I'm tired of keeping our fertility struggles and pregnancy losses private/secret any longer.  Or maybe I felt more confident being pretty direct about it because my husband and I finally "outted" ourselves to our extended family and close friends this weekend.  I'll write about the way we shared our struggles and losses and the incredibly supportive responses we've received this week in my next post.

Just a Quick Post . . .

. . . to thank all of you for your support and leaving me such thoughtful comments.  I have some other thoughts and updates to share, but honestly I am not too motivated to write it all down at the moment.  I just wanted to make sure you all knew that I've read and appreciated all of your messages. 

No More Baby

***Warning!  May not be for the faint of heart.***

My third beta was scheduled for today.  I woke up early this morning to take my mom and sister to the airport by 7:00 a.m. and then headed to the lab.  Right before I left my house, I inserted my morning MVP and noticed a slight amount of red blood on the applicator after I removed it.  Given my bleeding experience last week which still resulted in more than doubling HCG levels, I tried not to be too concerned especially since I was going to be at the clinic in less than an hour for bloodwork anyway.  I dropped mom and sis off at the airport and made my way to the clinic.  The clinic is located downtown in the midst of a large medical and university campus and it is a bit of a walk from the closest parking garage to the office itself.  While I was walking there, I felt a substantial warm gush and just knew I was bleeding.  I made it to the clinic receptionist to check-in for the bloodwork, but asked to see a nurse first since I had started bleeding again.  My favorite nurse greeted me with empathy, suggested I have the bloodwork done first and that they would call me as soon as it came in.  She gave me the standard instructions ("if you start bleeding heavily or feel sharp pains, yadda yadda, call us right away").  I had my blood drawn and was heading back home by 7:30 a.m.  (extremely thankful that today was my day off and I would be able to come home and just lay on the couch without having to call in sick).

I was home by 8:00 a.m.  I changed into my comfy sweats and went to the bathroom (warning, TMI ahead) and that is when I felt the first chunk of something pass.  I couldn't bear to flush the toilet full of blood.  I called my husband, who was already at work, in a panic and he immediately came home.  I never felt large clots passing with my other two miscarriages - they were both just like longer and heavier periods with lots of cramping and dark red blood.  So then I thought, maybe it was the MVP I had just inserted less than 2 hours before that came out.  But about an hour later, I went to the bathroom again and felt two large clots pass that time.  I was still bleeding bright red, but otherwise felt okay.  No cramping, no nausea, not dizzy.  My husband wanted me to call the clinic back, but I, probably foolishly, said no and that I would wait until the nurse called with my beta results and then let her know what had been going on since I was home.  Well, that wasn't a good plan.  Next thing I know it, I bled to the point where it soaked through my thick maxi-pad, through my underwear and favorite sweatpants and right onto our couch.   I ran up to the bathroom, sat on the toilet and passed 3-4 more large clots.  I thought for sure the baby was in the toilet.  Heeding my husband's earlier suggestion, I yelled to him to call the RE's office.  He did and they told us to come right away.  I put a new thick, maxi-pad and a pair of old jeans on and we were on our way. 

The walk from the garage to the office was not fun.  Half way there I could feel another large clot coming out.  They were expecting us when we got there.  I told them I needed to use the bathroom and then the nurse's had a quiet conversation on whether or not they would want/need to see whatever I deposited in the toilet.  The consensus was no, because it was early, 5w5d, and they suspected that whatever it was apparently wouldn't be worth viewing.  In the bathroom, I passed another large clot and discovered that I had bled through the maxi-pad I had put on less than 30 minutes earlier.  After I used the bathroom, I was taken to an exam/ultrasound room.  My vitals were taken and the doctor quickly came in.  He seemed to be shocked by the amount of my bleeding and the clots.  He said that he was glad that we came in and that if I had waited much longer, I would have probably needed an ambulance.  To my surprise, the vag cam revealed that the sac was still there, but it was not attached to the uterine wall any more and was making its way down and out.  Because the bleeding was significant, we were given two options: (1) transfer me for surgery under anesthesia, which could take 1-2 hours before it would begin, with the possibility of passing the sac on my own before we got there; or (2) do a suction curettage, an outpatient procedure, right there in the office which should stop the bleeding within 15-20 minutes assuming no other complications.  We opted for the second choice.  I wanted it to be over sooner and I knew the sac was still there and if they got it all out then they might be able to test the tissue.

Of course, the RE had to discuss the risks with us and I had to sign a consent form (although I know this is standard procedure, I wonder if the RE was also remembering that my husband and I are both attorneys).  Two nurses and a medical fellow came in to assist the RE.  They numbed my cervix, waited a few minutes and then inserted a small vacuum to remove the sac.  The fellow was controlling the abdominal ultrasound to help the RE guide the vacuum.  There was some cramping, but it wasn't as bad as the HSG I had done.  And just when I thought it was over, I heard the RE say something about still being concerned by the bleeding and that he needed to make "a second pass" to make sure most of the tissue was gone.  I think that part of the reason he did that was in the hopes of retrieving more tissue so that there would be enough for pathology to try to test.  Before the procedure started, he never mentioned the possibility of needing to make a second pass.  I cried and I laughed throughout the procedure.  I wasn't really in control of my emotional reactions.  It all seemed to happen so fast.  Somewhere in the midst of all this, I heard them reviewing my HCG levels.  They were at 10,956 today.

After the procedure was done, I stayed in the room to rest for a bit with my husband.  I was given wash cloths to clean myself up.  After awhile, I got dressed.  The RE came in to talk with us for a bit and gave me a prescription for an antibiotic and explained the risk of a potential infection.  Unless I experience anything out of the ordinary, I go back in two weeks for bloodwork again to make sure my HCG is dropping.  The pathology and genetic tests may or may not work and we won't get results for at least a month.  We are now back home, possibly in need of a new couch.  Just flipped the cushion over for now.

This is miscarriage #3 so I can officially be diagnosed with recurrent pregnancy loss (RPL).  It's completely boggling to me how RPL is not a diagnosis after two pregnancy losses with no live births ever, but who am I to say?

What I do know is, I have an absolutley AMAZING husband.  This is so hard for him, too, in so many ways.  He's grieving our losses and was very scared for my well-being today.  But through everything today, he remained strong and calm and loving and supportive . . . like he always is.  He's shared the news with our family members because I just couldn't do it.  He called our friend to cancel the plans we had with him tonight.  He bought me a big ass Diet Coke from Mickey D's (something I have been denying myself from the moment we found out I was pregnant).  I truly have no idea what I would do without him.  And I truly hope that one day I will be able to give him the family we both desperately want.

Trying to Relax and Remain Calm . . .

. . . but it isn't easy and doesn't come naturally after experiencing prior pregnancy losses.  Today is 5w1d.  Still SO early.  I'm tense every time I go to the bathroom, holding my breath until I inspect the toilet paper and make sure the bleeding hasn't started again.  I'm also wondering if the results of my second beta were just some fluke and because of the early bleeding I had I may no longer be pregnant.  I don't want to POAS for fear of seeing the line getting fainter and disappearing.  I should have insisted on getting another beta before Friday, just to make me feel better.

I also have a love/hate relationship with my progesterone - I have started calling it my MVP (for "magical vaginal pill").  I'm hoping that this pregnancy will progress without much difficulty because I'm using the MVP this time around.  My first pregnancy happened about 9 months after we started TTC and before we started seeking fertility treatments.  It was before we really knew we had any issues to be concerned about so I didn't even know progesterone supplements existed.  My second pregnancy occurred naturally, two years after our first miscarriage, while we were on a break from medical interventions.  Now two years wiser and more experienced with IF, I asked for the progesterone suppositories once I discovered I was pregnant this time.  However, the RE I was seeing at the time was out of town and unavailable and the RE who was covering for him didn't think it was necessary.  That pregnancy didn't make it beyond 8 weeks either.  My biggest complaint about my MVP is the mess it creates and (sorry TMI ahead) the warm gushy flow it creates that always makes me think I've started bleeding.

I wish I was experiencing more of the typical symptoms everyone seems to associate with pregnancy.  My boobs really aren't sore or hurt at all.  I have had to pee more often, but I think that is partially because I have been drinking more water than I normally do.  I have been somewhat queasy, but no major nausea or vomiting.  I was pretty exhausted on Saturday and fell asleep on the couch by 6:30 p.m.  I slept until about 1:30 a.m. and then was wide awake until about 11:00 am.  This is very unusual for me.  But other than that, I'm feeling pretty good which then makes me second guess whether everything is really okay.

I'm trying to take it easy as much as possible.  Although logically I know there really isn't anything that I can do to cause or prevent a miscarriage, I just can't help but wonder whether I'm doing things "right."  Most people think I have a stressful job.  I do work about 10 hours per day on average and often bring home work to do on the evenings and weekends.  But I'm trying to not be all consumed by work as much.  Truth is, I actually like and enjoy my job and it keeps me occupied.  If I'm busy, the time goes by faster and it helps me keep my mind off the IF roller coaster. 

I know every pregnant woman is likely apprehensive, gets nervous and worries throughout her pregnancy.  I just envy those fertiles out there who don't have to add "I wonder if I'll lose this pregnancy, too?" or "I wonder if I'll make it past the first trimester this time?" to their list of concerns.