Monday, December 31, 2007

Happy Friggin' New Year

Well, OK, it’s New Year’s Eve – but given that I haven’t blogged since early December – I better say Happy New Year today – because I might not be back until Spring. Who knows?

Currently – the biggest dilemma in my TTC journey is: WHEN TO START THE FRIGGIN’ LOVENOX?

So far … hematologist says 1 day after IUI is OK – but she’d prefer I start later. (I actually have a call in to her now to clarify.) RE would also prefer I wait until I get a BFP – but will go along with me starting earlier since hemo said it was OK. MFM (or is it MFS? I can’t figure out exactly what perinatologists are called these day) anyway – she said “don’t start at all” when it comes to Lovenox but she annoyed me so I’m not listening to her – and will seek out a different MFM when and if the time comes.

(She annoyed me because she referred to my chemical pregnancies as a “whiff” of pregnancy. Now – I know what she meant. And I am actually not emotionally torn up over my chemical pregnancies. But some people are and she has no way of knowing which type of person I am. Regardless – I don’t appreciate having any of my miscarriages referred to as “whiffs”.)

OK …just heard back from hemo’s office. She recommends I start Lovenox within one week of insemination. Okey-dokey.

I am so on the fence about this. Not about WHETHER to take Lovenox – only about WHEN. I don’t want to start it too soon – for fear of impeding implantation by having my blood be too thin. Nor do I want to start it too late – for fear of impeding implantation by having my blood be too thick. And no one has an exact answer for me – apparently because it’s not an exact science – and really -- the doctors just … aren’t … sure. So if THEY’RE not sure – well, I’m REALLY not sure.

There is a camp that says someone like me should start lovenox on CD 6 – quite early in one’s cycle. And I get where they’re coming from too … start it early – while endometrium is being laid down – so it’s not a big clotty mess that tiny embryo can’t snuggle into. But those who say to start later – well, I get where they’re coming from too. I have visions of a little embryo just sliding right off because he can’t burrow in because the blood is too thin and he just slides away.

I have a lot of visions, don’t I?

The thing is – before my last chemical pregnancy – I had a uterine septum removed. That septum could have caused my first two losses, indeed, that seemed to be the ANSWER at the time. Then I had the post-septum chemical pregnancy – which almost went unnoticed as my RE’s office wasn’t even going to test me for pregnancy (long story .. less recent blog entry ..)

But after the chemical pregnancy that happened after the septum removal – RE decided to run RPL panel on me and low and behold – I turn out to have homozygous MTHFR (looks like MotherFucker, doesn’t it?) C677T and heterozygous Factor V Freakin’ Leiden.

And then that seemed to be the ANSWER and I was all ready to get my Lovenox and get rockin’ and then I started reading and then I solicited 19 different opinions (well, not really, but I’m exaggerating to make a point) from 19 different doctors and read study after study and now … I’m still not sure when to start the friggin’ Lovenox.

I have no definitive answer. I am so scared to mess this up. I just want to get pregnant – and stay pregnant.

I guess I’ll start the Lovenox a week or so after my IUI. And don’t even get me started on the baby aspirin (I’m on it. Even though hemo said I don’t need to be. Everything else I’ve read suggests otherwise. Basically – I’m picking and choosing my advice – and going with my gut. But my gut isn’t so sure right now.) I'm on foltex too. And a prenatal (hemo said I don't need that anymore either. Um, yeah, I think I'll keep taking it, thanks though.)

Maybe I should just pray. Seems like as good an idea as any of these other ideas.

Oh, and Happy Friggin’ New Year. I hope 2008 is better for both of us.

Friday, December 14, 2007

And now I'm freaking out ...

OK, I'm not really freaking out ... but I was. Sort of. After I got my diagnosis and was feeling all warm and fuzzy and thinking the internet saved my baby ... I started doing research. And my heart just sank. Apparently … although treatable … the blood clotting disorders I have are:

a) misunderstood
b) very, very serious
c) known to cause miscarriage, terrible pregnancy complications and even fetal death
d) all of the above

Unfortunately … the answer is … d. Now … I know, you can’t believe everything you read on the internet. But I’ve hooked up with some very knowledgeable … very intelligent yahoo internet groups – a Factor V Leiden group and a Reproductive Immunology group. And what I’ve gleaned is this:

1) These disorders are nothing to mess around with.
2) Doctors disagree about the seriousness of these disorders – and the best treatment for these disorders.
3) You need to be your own advocate (hmm .. sounds familiar …) to get the best treatment for these disorders.
4) I am never going to have the uncomplicated pregnancy I’ve dreamed about for so long.

Now … you may ask yourself – wasn’t number 4 out the window a long time ago – given all of the infertility crap you’ve been dealing with for well over a year now? Well .. no. I still thought I’d get pregnant – and have a healthy, normal pregnancy – and deliver my baby with the help of midwives (in a hospital setting .. not at home. I’m not that crunchy. My sisters are. They have babies at home. I’m a little more conservative on that front.)

But now – all of that really is out the window. I’ve read some very sad things about women who have the exact same blood clotting disorders as me: heterozygous Factor V Leiden and Homozygous MTHFR C677T. Late second trimester losses … and even stillbirths as late as 38 weeks. Placentas full of clots .. and other really sad, sobering stories. Now … on the bright side (yes, there is a bright side) – these stories were about women who did not know they had these disorders until it was too late. They were not being treated. I will be treated once I get pregnant … if I get pregnant. That doesn't make my risk zero. But it should lessen my risk considerably.

I saw the hematologist my RE referred me to this past week. She was … nice. But wildly unimpressive. I felt like I knew more about the recommended treatments for my disorders than she did. And that makes me nervous about my RE … why did he send me to a hematologist whose specialty is cancer? (And I know many hemo’s specialize in cancer. But I want one who specializes in pregnant people. Or, to be more correct at this point, one who specializes in infertile, recurrent miscarriage people.)

I’m learning those kind of “specialists” are few and far between. I’m learning that the late Dr. Alan Beer devoted his life to the study of blood clotting disorders and reproductive immunology – but unfortunately – too few doctors are aware of his work and his research. I’m learning that I can’t just listen to what doctors say – without questioning their information. Or doing what’s right for me.

The hematologist told me I’d require NO special care once pregnant – even though I’d be on a blood thinner called Lovenox. Oh - and have these disorders known to cause FETAL DEATH. That flies in the face of what I’m learning in my yahoo groups and elsewhere as far as these disorders. I’ve already called and scheduled appointments with two different high risk group – maternal fetal medicine specialists (perinatologists.) And guess what? The receptionists at either office didn’t blink an eye when I said I wanted to have a pre-pregnancy consultation due to having been recently diagnosed with blood clotting disorders. They took my information – including the name of my disorders (which they were familiar with) – and thought it was very appropriate that I was seeking a consultation with a high risk doctor. Score: hematologist = 0, me = 1.

I’m sure I’d fight like a lioness if I had a baby and his or her health was threatened. Well, I’m fighting to try and make sure that he or she gets a chance to exist.

And freaking out in the meantime. But only a little. Except the moments where I'm freaking out a lot.

Friday, December 7, 2007

The Internet Saved My Baby

Sounds like something that should be on the cover of a tabloid magazine, right? Well in my case .. it may very well be true. Although I should clarify - the baby I'm referring to doesn't exist yet. But he/she might never exist if not for the gentle urging of a group of very informed women on the Trouble TTC board I frequent.

Here's how the internet saved my future baby:

In late October 2007 - I started bleeding the same day I got a BFP. It was a Friday - my RE's office said they couldn't bring me in for a beta until Monday. The same nurse who said they couldn't bring me in for a BFP also suggested the positive I was seeing could just be traces of the trigger shot I had 15 days earlier. Which made me really angry. Most 10,000IU HCG trigger shots are "out" within 10 days. Anyway - I had tested three times earlier in the week - all negative. It WASN'T the trigger.

At the urging of the women on my T-TTC board - I went to a walk-in medi-clinic that day and got a blood test. The result was a positive HCG of 32.1. I kept bleeding and by Monday the results of another beta were negative. It was an early m/c. I wouldn't have been sure of that (nor would my RE) if this board had not urged me to go get the blood test (the results of which were faxed to my RE.)

On that same Monday, after my negative beta the nurse at my RE's office said if it happened again - my RE might want to do further testing - but not now. That didn't sound right to me. Again? No thank you. I've had two other miscarriages in my lifetime (and TOLD her that) - this most recent chemical pregnancy was #3. So - I called the appointment desk folks and made an appointment with my RE. When I saw him - three weeks later - he agreed with me that this was not a good sign - and ordered RPL (recurrent pregnancy loss) bloodwork. While I was glad he ordered the bloodwork .. I felt sure that everything would come back "normal". I had it in my head that my three losses were coincidences or bad luck. One of them, at age 28, was "unconfirmed" - I had a positive pregnancy test after being 11 days late - started bleeding a few days later - went to the hospital where the blood test that gave me = negative. For years I thought it was a "false" positive - until I learned about chemical pregnancies. My first miscarriage happened when I was a scared teenager at approximately 10 weeks gestation. Because they were so spread apart - and because I was the one "pushing" for additional testing - I thought the results would be normal. Surely - if something was possibly wrong - the nurse and the doctor would have been adamant about me getting tested right away ... right?

Well - I got some of those results back today.

It appears I have two .. not one .. but TWO blood clotting disorders that are linked to recurrent pregnancy loss (hence - the reason they are included on a recurrent pregnancy loss panel of tests!) The disorders are Factor V Leiden and MTHFR. I tested positive for one copy of the the R506Q (Factor V Leiden) mutation in the Factor V gene. I tested positive for two copies of the C677T gene mutation as far as the MTHFR. I don't know a lot about these disorders yet ... but I will by the end of the weekend, let me assure you!

My RE is sending me to see a hematologist next week. I'll know more about specific treatment after that. Right now - I know daily baby aspirin, LOTS of folic acid, and an injectable drug called Lovenox are probably in my future. My near future.

The good news is - I also had a sono-hysterogram today and it went fine - my uterus is in great shape - no trace of the septum that was removed last March. That was a big relief. I was worried that perhaps there was some unknown complication left over from the surgery.

But the clotting disorders ... that really caught me off guard. In addition to pregnancy loss - there are other associated problems and bad pregnancy outcomes (preeclampsia, stillbirth - a host of issues.)

If I hadn't pushed, if I hadn't spoken up - chances are, if I got pregnant again - I would have had a fourth miscarriage. Because the women on my internet TTTC board pushed me to get tested - I can now get treated - and if I am able to get pregnant again - I should have a much better chance of STAYING pregnant too.

If you have ever wondered if you should speak up, or get a second opinion, or ask questions - I hope my story inspires you to do so. That - coupled with the fact that it wasn't until I sought a second opinion (from my current RE) I wouldn't have had a laparoscopy during which mild endometriosis was discovered, nor would I have had the hysteroscopy during which my uterine septum was discovered and removed. My first RE would've just put me on clomid (a drug that my current RE, the second opinion guy, thinks would have been very bad for me.)

So .. yeah .. thanks to the girls who insisted I go get a blood test on the day I tested positive at home - and who urged me to get further testing after chemical pregnancy was confirmed - I have a better chance of STAYING pregnant and delivering a healthy baby - if we can get me pregnant again.

I feel like that WILL happen. I hope I am right.

You always hear you have to be your own advocate when it comes to your health - and it seems like just one of those things you always hear. But ... it's true. Who says you can't believe anything you read on the internet? You can believe my story. I wouldn't have pushed - if the girls on the internet hadn't pushed me. So -- they really may have saved my baby.

Speak up for yourself ladies (and gentlemen.) I'm glad I did.