About one year ago, I was seeing a rheumatologist and having a bunch of tests run. Long story short, she was looking for a reason that I would have tested positive for an autoimmune disease and what it might be.
In all of her testing, she found that I had positive antibodies for something called antiphospholipid syndrome.
Antiphospholipid syndrome is a blood clotting disorder that can cause miscarriages.
In order to be diagnosed, you have to run the blood work twice (at least 12 weeks apart), and have the antibodies come up positive.
She told me that if I was to become pregnant, I’d need to notify my OB immediately.
I hung on to these results and did just that. My OB recommended getting on low dose aspirin for the pregnancy, and seeing a maternal fetal medicine specialist.
I’d mentioned to my OB that I was supposed to have a second set of tests run, but oddly enough the two OB’s I talked to at my practice said they’d never heard of that for a diagnosis.
They didn’t seem concerned about the potential for this diagnosis, either- as I’ve never had any miscarriages (that I am aware of).
After seeing the specialist, however, I was instructed to have the tests run again. As soon as they were run, I sent the results over to them, and my phone rang the very next day.
It was one of those phone calls where you see the number, and just know it’s going to be important. I sat up from my attempt to nap, and answered the phone…
It was the head doctor at the maternal fetal medicine practice calling to tell me the news. I officially have antiphospholipid syndrome and I am considered to be an extremely high risk for miscarriage.
The call was brief, and he wanted me to come in asap to learn how to do injections of lovenox into my stomach. I was told that I’d be on blood thinners for the remainder of the pregnancy, with daily injections that I’d do at home.
After only a quick conversation, the phone call was over, and I sat stunned at the news.
Here I had been- not at all worried. There was no sense of urgency from the rheumatologist a year ago, no sense of urgency from the cardiologist I’d seen the week prior, no sense of urgency from my OB practice now, and yet here I was being told by the specialist that if we hadn’t caught this, I’d be very likely to lose our baby.
The news hit me hard, and I just cried. I cried and cried at the thought of all of this.
I honestly had no idea what was going on, as no one had taken the time to really talk to me about anything- risks to me, risks to the baby, risks of the treatment, etc.
I had SO many questions and realized I needed to figure out what all I wanted to ask the next day when I was scheduled to see the specialist.
I researched and came up with a list of questions. In my research I was shocked to see a 90% miscarriage rate without treatment!
Caroline being born without treatment suddenly seemed like it was a miracle. We had no idea about any of this back then…
The next day, I saw the specialist and he answered all of my questions. I was very reassured by all of his explanations and confidence in the treatment.
– I am to do daily injections of lovenox (a blood thinner) into my stomach
– I am to continue taking a daily dose of low dose (81mg) aspirin
– He’s NEVER lost a baby when the mother was receiving treatment and aware of this syndrome
– They will monitor me with ultrasounds every 4 weeks in the beginning, increasing towards the end of the pregnancy, where they’ll take images of blood flow, etc. and monitor closely for blood clots
– Around the 36 week mark I will be switched from lovenox to heparin to prevent delivery complications while on blood thinners. Lovenox has a longer half life (stays in your system longer) than heparin, and thus heparin is safer leading up to delivery
– Travel is fine and all normal life activities can be resumed
– Swimming doesn’t pose a risk of infection at the injection site
– After my pregnancy I will most likely not be considered high risk for blood clots, since I haven’t had any clinical signs (only positive blood work)- therefore, I will not be on blood thinners after the pregnancy, unless clinical signs start to show up and indicate a risk for my health
They briefly showed me how to do the injections.
I was told to insert the needle 2 inches away from my belly button, pinch the skin, and insert the needle quickly. The needle should be inserted at a 90 degree angle.
When I got home later that night with all of my injection supplies, I couldn’t do it. I couldn’t get my hand to move and jab myself with the needle.
I sat for an hour with the syringe in my hand, but I was in a complete mental block and it was not happening.
I took a break, took a shower, ate some food and relaxed. I decided to talk with a couple of moms online that have gone through this.
They gave me some advice and mommy encouragement, and then I took to YouTube. Thank goodness we have the internet nowadays!
I watched videos of other women doing these injections. While they all did things very differently, and all complained of different pain levels (some saying it was unbearable), they all did one thing in common.
They all inserted the needle SLOWLY. They didn’t jab the needle in. They didn’t stab themselves. They slowly pushed it through their skin.
I realized that my mental block was not in fear of the pain of the shot, or the feel of the medicine, or anything other than the actual stabbing motion into my skin.
I didn’t want to stab myself with a needle- plain and simple. The funny thing is I’ve done it before. I’ve done fertility injections (it was either 3 or 4 injections that I did in my stomach to conceive Caroline).
I get biweekly B12 injections, that I am now starting to do myself at home. The shot isn’t what’s fearful to me. The shot isn’t the mental block- it was just the stab.
After watching the videos, I discarded the advice that my nurse gave me to stab the needle in quickly. I slowly pushed it through my skin, and it was super easy to do.
In a few minutes I was done. I took the time to do the plunger slowly, since the medicine seemed to burn if it was going in fast. I was done in no time and had finished my first shot.
It did burn for a while afterwards (felt like a bee sting). I now know I can do this, however. It is soooo going to suck doing daily injections for the entirety of my pregnancy, but it’s doable and it’s worth it.
Learning the news of my diagnosis was a frightening and jarring experience. I am so lucky to have this information, however, and to be able to treat the syndrome prior to having any “clinical” signs.
After doing research online, it seems obvious to me that most women aren’t tested for antiphospholipid syndrome unless they’ve had multiple miscarriages. At that point they undergo tests, receive a diagnosis and treatment.
It’s so unfortunate, because with the knowledge that comes from a simple blood test, so many of those miscarriages and heartaches could have been prevented.
I honestly don’t know why this isn’t a standard test that’s included at the first OB appointment. And, clearly, regular OB’s are not trained on how to deal with this diagnoses, as it wasn’t until I saw a specialist, that the urgency and treatment began.
I feel very lucky to have found out this news without having to endure a miscarriage, and very lucky that my OB knew enough to send me to the high risk specialist.
I’d love to hear your experiences with antiphospholipid syndrome, injections, diagnosis, etc.!