Tuesday, March 10, 2009

Lab Results

Somehow, I knew there would be an explanation.

I think the little rehearsed condolence that my OB presented me with at that horrible ultrasound appointment was just something that she learned in medical school. It was too standard, just a clueless assurance that this child must have had some terrible problem and how hard it would have been to deal with those kinds of difficulties after birth, and that I shouldn't worry that it was because of anything I had done. And maybe most people really need that, just a blanket of semi-medical sympathy and a sense that it was "for the best".

Except that in my case, it wasn't.

My labs came back with extremely low levels of a protein that inhibits clotting, and high levels of anticardiolipin antibodies. The protein is "S", which decreases throughout pregnancy anyway, so if the levels are already low you may be perfectly fine until the second trimester, when they really begin to plummet. The anticardiolipins indicate an immune response disorder. The crazy thing is, I've been tested for both of these things twice before since they are part of the standard "recurrent miscarriage" workup. Apparently, you can acquire some of these blood disorders at any time, including....when taking IVF medications.

They don't know for sure that IVF triggered this change. They don't even know for sure if clotting is what ended this pregnancy. They also don't know if my S levels will go back to normal in a few weeks (typically they are very low at delivery and go back up to normal within six weeks). They'll retest for the ACA, too, as well as a jillion other things, but the bottom line is that even if my S is normal next month, it could be that it just gets too low when I'm pregnant.

All clotting problems are worse as people age, so the fact that I had an easy pregnancy almost eleven years ago doesn't really have anything to do with this. Plus, at the time I was on baby aspirin because I supposedly had a mitral valve prolapse (a floppy valve in the heart). I had partially lost my vision one night and was told that the floppy valve can push clots to the optic nerve. Later it turned out that because MVP was overdiagnosed for a long time, my doctor had me rescanned with better equipment and there wasn't even a suggestion of prolapse, so I've been off the aspirin for years. (I have lost my vision again since then, but it turns out to be a precursor to incredibly bad migraines.)

Of course, it just wrecks me to think that a baby aspirin could have changed all this. I had even asked if there was any benefit to aspirin during my IVF cycle, and was told that because I have reflux problems and was not taking any of the acid-blocking medications I should forego all aspirin. Which made sense at the time. Reflux makes my asthma worse, and breathing seemed like an important part of pregnancy.

Okay, when I look back at what I have just typed I feel like I am such a collection of medical problems. Lung, stomach, blood, vision - no wonder evolution doesn't want me to procreate. But I swear I am not some kind of semi-invalid just trying to survive day to day. I feel really healthy most of the time. As long as I don't eat too many tomatoes or sniff a cat I am basically fine. Unless I try to have a baby.


Sky said...

Oh Lorraine - that just sucks! But now what about this "S" thing? If it happens to just get too low for you during pregnancy, can they do something to combat that?

I know what you're doing - what I'd do; wondering if it all would have gone differently with a daily baby aspirin. And wouldn't it be awesome if you knew that was it? The most frustrating part is not knowing what the hell caused the miscarriage, even for women who will never try for another child - it's just that knowing is so important for closure of THAT pregnancy.

Hugs girl and kudos to you for testing and trying to get answers!

PJ said...

OK my head is spinning from all of the medical jargan, but I get the drift.

I don't know whether to wish for something concrete like that with my diagnosis, or whether I'd like it to be a "we just don't know" kind of thing. Of course, I don't even have an appointment yet.

Are you feeling relieved to know? Are you thinking about letting go or trying again?

Don't feel like you've got to answer my questions, I'm just reacting and relating to my own situation. I'm sure you're still mulling those things over, as I would for a while.

Thanks for updating us.

Midlife Mommy said...

I am so sorry. That news is just awful . . . but please know that knowing doesn't make it your fault. Hugs.

Nikki said...

Lorraine - that's awful! After my first m/c when they found out that I had MTHFR mutation, and I read up about it and when I calculated the dates backwards in my head, it seemed sort of obvious that my baby had stopped growing the same day that I stopped taking baby aspirin. (I was bleeding, and the RE thought my blood was getting too thin and I should stop the aspirin)

If and when you try again, can they keep checking your protein s during pregnancy, so as to be able to help you before the levels fall too low? Or put you on aspirin along with something for your reflux?

God, this is so hard. I'm so sorry sweetie. I know how important it is to find out what went wrong, and I also know how crushing the findings can be sometimes.

Also - thanks for the love and support you've shown me over the last couple of days. I cried reading your comments - thank you so much for being there for me!

Sarah said...

wow, you have learned so much and i'm so sorry you've had to have this education. although i know it can be an important part of moving on and sometimes you just want to know the answers even when they are terrible.

there is always such a huge evolution we go through with these things, what are you thinking is next for you?

Anonymous said...

Your are an amazing woman! Thank YOU for contacting me. I am sorry about your loss and all that you have been through. I bet there is something you can take along side the baby aspirin to help with the reflux. I am glad you got some answers. One of my m/c's was a trisomy and the last one was undeterminded because it was too early and I didn't get the tissue tested. Not "knowing" has been much harder on me. Thank you again for your support!!!