Friday, February 21, 2014

Why Did I Miscarry? Blood Results

Part 1, here.

If you've ever had a miscarriage, you know the things start going through your mind. Things like "maybe I didn't eat well enough" or "maybe I was too stressed from work". But then this God-sent article (and a doctor friend of ours) helped put those feelings to rest. They just happen. Try again. Nothing you did caused this.

Well, okay. But I still had a itching feeling something might be off. I recalled my college years, where I had some odd visits to the campus clinic. I did go to the clinic a lot, for a ton of the regular things. In fact, when I visited for a bad sinus infection the week before graduating, I saw my file. It was huge, and I wanted to take it as a memento to the fact that I came out of college in one piece. In retrospect I should have taken it. 

Since they apparently lost it and keep insisting that it's gone forever. 

So, for the first half of November, my new priority was (basically) to harass them until they found it. Which they kept saying they couldn't. One more reason that the digitization of medical records is awesome (albeit, too late in arriving in rural PA).

Tom and I started to think about getting pregnant again... since all the advice says to just try again. And bam, only 1 cycle after the miscarriage we got a positive test. And I just forgot about finding my medical records. It was lost forever, after all.

Fast forward to our second appointment for pregnancy #2, we found out we definitely had another miscarriage (no growth, no heartbeat). At this point, I mentioned to my doctor that I've had some autoimmune-ish symptoms in college, and if she thought they might be something to look into.

She said yes, definitely. And then told me that had I mentioned them earlier, she could have maybe given me something? Um, thanks doc..... what a beacon of light.

What were the issues? I have trouble healing after any cut or bruise (a month or more generally), was always tired and feel like I'm in pain. In March of last year I found that my hands and thumbs would twitch on their own when held in certain positions (holding my phone to text). And then I mentioned the college clinic episodes. I had two episodes where the resolution was to 'reset my immume system'. Well that of course sent up some red flags.

March 2007 (I think?)
I had some little red spots that showed up on my legs, and I attributed it to the cold weather. I've always gotten raised and itchy legs when out in the cold for too long, but that's another story for another day. I was pretty much unconcerned with the little spots (which resembled this photo), until one day they jumped to my left forearm. Then my chest. By the time I made it in to the clinic, it was around the time that this next thing started happening...

April 2007 (again, I think?) 
I started coughing blood. And yes, this sounds bad but it really was that everytime I would cough, a tiny spot of blood would come out. I didn't have the flu or pneumonia or any sickness so of course, this took me only about a week to get seen for. I know. Facepalm. The clinic doctor listened to me tell her all the information about the spots and the coughing blood, and did all the normal tests you would expect. I am a little fuzzy as to how she determined that my autoimmune system was 'short-circuiting', but I took that answer. "Just give me the pills, I have class to get to" was my reasoning. She prescribed something to "reset my immune system" and it worked.  

We went in for bloodwork in January, and waited around for a month. Right before Valentines Day we returned to hear the results.

I have the Lupus Anticoagulant Antibody. Meaning that while it doesn't appear that I have Lupus (test results did come back in normal range for that), I do have an antibody that is prevalent in Lupus. My body has a clotting issue, where the most common symptom is fetal loss and miscarriage.

I'm still trying to wrap my brain around this term, especially since it is misleading (according to here).
First, the term “anticoagulant” is a false label, since lupus anticoagulant actually increases the ability of the blood to clot. Second, the term “lupus” in the name of the antibody is misleading, since more than half of all people who possess this antibody do not have lupus.
2 Things that are Especially Annoying:
- I have to wait the 3 month period to re-run the test (in order to get an identical results to confirm)
- Although I have some trademark issues that people with lupus get or that coexist with lupus (like spots appearing on the skin, red 'butterfly-ish' rash on face, GERD and blood clot in lungs)- the test for SLE came up in the normal range. So... what is up with that?

I can't get a rheumatologist until after May when I get the confirming blood tests. It feels like I'm being led around in the dark on this whole thing. At least I know it's for a reason and that God knows what is going on. Still, this sucks.

I tend to write about whatever has been on my mind and in my life, and right now, this is it. Maybe (or maybe not) I'll be bringing this up more in the future. I would at this point love to see blogs with this issue covered and am not finding it so much. It is so encouraging to see someone who has gotten to give birth, after having been dealing with the same thing you are coping with at that moment. If I am blessed with children, I would like to allow anyone just starting out to see my before, middle and end results and what therapy helped me get there.

Anyone reading this know about lupus anticoagulant? Any resources or blogs to steady the mind?

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