Antiphospholipid Syndrome

How’s that for a sexy title?

First of all, thank you to everyone who threw some extra love my way after my last post. I truly needed it. This was a rough week, but your kind words helped my heart hurt a little less.

Second of all, I mentioned offhand in the last post that all of the blood tests for my recurrent miscarriage panel were normal. Well, apparently that’s not true.

Some backstory: I had few tests done in December, right after I found out the baby wouldn’t make it. One of these was a test for something called anticardiolipin antibodies. The short explanation is that these antibodies can cause blood clotting issues.

The anticardiolipin test came back “slightly elevated,” but my doctor said that could just be because I was still pregnant.

So I had the test repeated a few weeks later. It was still elevated. At that point, my doctor referred me to a hematologist for further testing. The nurse I spoke to told me that my doctor “wasn’t that concerned about it,” but wanted me to go as a precaution.

I saw the hematologist on the last day of January. He drew a bunch o’ blood, and a little over a week later, his nurse called and told me the labs were all normal.

Apparently she was just kidding about that, because the evening after I wrote my last post, the hematologist himself called and left me a voicemail. It said:

“All of your labs were normal except for the anticardiolipin antibody, which was high. This is part of Antiphospholipid Antibody syndrome. I think you should go ahead and take baby aspirin with low-dose Lovenox the next time you get pregnant. Nothing to worry about—this just helps us plan better for the next time.”

He of course was not in the office on Friday, so I can’t talk to him until Monday. And my own doctor didn’t have the report yet, so I couldn’t talk to her about it either.

So right now I am just trying to do some research to figure out what the heck this all means. Here’s a definition below from the Mayo Clinic, in case, like me, you’ve never heard of this syndrome before:

“Antiphospholipid syndrome occurs when your immune system mistakenly attacks some of the normal proteins in your blood. Antiphospholipid syndrome can cause blood clots to form within your arteries or veins. It can also cause pregnancy complications, such as miscarriage and stillbirth.”

This condition is often treated with blood thinners, which is what the hematologist recommended in his message.

My actual number on the last test was 96. Apparently anything below 13 is normal. Anything above 80 is strongly positive. I don’t know what my numbers were on the two draws before this one, but I find it weird that they were only “slightly elevated” and my doctor was “not that concerned,” when this one was so clearly high.

Meh. I’ve got more questions than answers at this point.

If anyone has this syndrome or has any information about it, I am all ears! My friend over at Spirit Baby Come Home sent me some helpful links, but most of the other stuff I’m finding online is just broad overviews.

I don’t want to get too ahead of myself before I know more, but could this be the reason for my miscarriages? Could this even be the reason for our infertility? Some of the things I’ve read said that this syndrome messes with implantation, so in that way it can cause infertility.

Could this really have been our problem all along?

Add Another Month Onto The Wait Pile

Guys, I’ve really been struggling this last week or so. I know I’m grieving, and I know that means ups and downs, but holy crap I just feel so down right now.

My cycle returned last night. I was all, “Hooray, I can have my day three ultrasound and schedule my hysteroscopy. Things are finally going to get started again!”

Nope.

See, the thing is that my hCG is not back at zero yet. Last week it was still at 26. So when I went to get my blood drawn this morning, the nurse said they won’t do an ultrasound or a hysteroscopy until my hCG is negative. This is not likely to happen in the next few days, as my hCG has been decreasing by half every week, so I probably have another two weeks before it’s totally down.

And apparently, even though I have a period (which, to me, clearly says my body has reset itself), I cannot proceed with any kind of tests until my hCG is at zero. Why? I have no idea. The nurse said it was protocol. I’m planning on sending my doctor an email today asking for further clarification.

Basically what this boils down to is that I’m benched from getting the hysteroscopy until my next cycle after this one. Which means I won’t be able to start IVF again for another two cycles. And that’s best-case scenario, provided that the hysteroscopy looks perfect.

That means there will be a minimum of five months between this IVF and this last. What the efffff? Almost a half a year…poof.

I’m not even sure if we are “allowed” to try on our own this month yet, since my doctor is still waiting to get some results back from my recurrent miscarriage panel. I actually know the results—they are normal (woo!), except for one slightly elevated blood-clotting test, which no one seemed concerned about. But hematology hasn’t sent her the report yet, despite my insistence that it’s time sensitive.

Stuck. That’s how I feel. Stuck in this place I don’t want to be. I want to be moving forward. Instead I continue to be in limbo.

I have no idea why the waiting is hitting me so hard, but I’m really not dealing well with it. Tim asked me last night how many IVF cycles I thought I had left in me. I told him I really couldn’t answer that question. Could I handle a few more IVFs—the estrogen priming, the injections, the retrieval and transfer? Sure! I didn’t think the actual process was bad at all. But if, say, three more rounds of IVF means two more years of waiting—waiting between cycles, waiting for a cyst to go away, waiting for hCG to go down to zero, etc.—then no. I cannot handle that.

So I don’t know. This isn’t a very tidy post. It’s just been a rough morning in a long string of really rough days. My hCG may not be at zero, but my hope sure is.

How Did They Keep Going?

We’ve all heard the stories about that one couple who went through four rounds of IVF or had five miscarriages, and then finally gave birth to a healthy baby. I used to love those stories. They used to fill me with hope. But right now all I can think is, How did they keep going?

After almost two years, four IUIs, 1 IVF and two miscarriages, I am tired.

Like, bone tired.

My heart is broken. My body feels like someone else’s. I don’t remember what it’s like to have my body belong just to me, without internal ultrasounds, pills, injections or surgical procedures. Without timed intercourse, supplements, acupuncture or special diets.

How did those other people, the ones that triumphed after so many years or so many tries, keep going?

I suppose the simple answer is faith. They had faith that their baby was waiting for them, faith that what they longed for would come to be. That faith must have given them energy, that extra push to keep going.

But me? My faith is seriously depleted. I am pretty much held together by some kind of figurative masking tape right now and if someone shook me hard enough I’d fall apart.

Despite my intense exhaustion, though, I’m somehow still going. With eyelids drooping, I’m plotting out my next step. Because to stop would mean giving up the dream — the deepest, widest, sweetest dream that I have. And I can’t do that. Not yet.

And maybe that’s how those people kept going: they lived from one Not Yet to the next. Not yet today, but maybe tomorrow. Not yet this minute, but maybe the next.

Not yet.

Not yet.

Not yet.