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:
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.