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I Have Antiphospholipid Syndrome, Which You've Probably Never Heard Of

After having multiple miscarriages Emily was diagnosed with antiphospholipid syndrome, an autoimmune disorder that causes an increased risk of blood clots. Read her story.


Emily and familyBy Emily

I have antiphospholipid syndrome. Most people have no idea what that is! Either did I until eight years ago. I started bleeding and cramping one day and thought I was getting my period. But after a few weeks of bleeding, I went to my ob/gyn and was told I was actually pregnant. I hadn't actually miscarried, but I would have if I hadn't gone to my health care provider. She informed me that I had blood clots in my uterus and instructed me to stay on bedrest and take progesterone for 18 weeks. I carried that baby full term and now my daughter is 8 years old!

During the pregnancy, I had some pains that I thought were my daughter kicking me in strange spots. But after delivery, the pain actually became worse. Six months after delivery, I found out that my gallbladder was only functioning at 3 percent and needed to be removed. The surgery was supposed to be in-and-out outpatient laparoscopy. I went home and a few days later, I started feeling pain again. Within the week, I passed out and had trouble breathing. I was rushed to the emergency room and they found I had a bile duct leak, my stomach was septic and I was suffering from a pulmonary embolism, which are blood clots in the lungs. I remained in the hospital for 9 days while they pumped me with blood thinners.

Over the next few years, I had two miscarriages, both happening between 6 and 7 weeks of pregnancy. I would feel horrible pain and pass out. The doctors would remove clots from my uterus but no one could figure out what was wrong. During that time, I noticed a black spot in my eye. I went to the eye doctor and they found a branch retinal artery occlusion in my eye, which is basically an eye stroke. The retina in my eye became blocked by a tiny blood clot and as a result, I lost 30 percent of my vision in that eye.

The doctors were afraid that the clot may have started in the heart, lung or leg and broke off. So I was transported from my hospital in rural Georgia to Emory University in Atlanta. After four days of testing and MRIs, I was diagnosed with antiphospholipid syndrome.

So what is antiphospholipid syndrome (APS)? It is an autoimmune disorder that causes an increased risk of blood clots. Your immune system mistakenly creates antibodies that cause problems in blood flow and can lead to clotting. This is a major cause of recurrent miscarriages and can cause strokes. I was immediately started on aspirin and sent home to a local hematologist. In between returning home and my doctor's appointment, I found out I was pregnant again!

I was put on a daily aspirin regimen to help prevent preeclampsia. I was also given blood thinner to prevent blood clots during pregnancy and give my pregnancy a better chance of success. Antiphospholipid syndrome has a high risk of stillbirth from clots forming in the placenta, so blood thinners are one of the only ways to prevent the clots. I had a hematologist, perinatalogist, and an ob/gyn as part of my healthcare team, which eased my anxiety. I fortunately felt really good during the pregnancy and had no issues.

My delivery, however, was a little more difficult. I had a delayed postpartum hemorrhage. Even with blood thinners, my clotting factor was double what it should have been. The uterine contractions from my breastfeeding caused baseball-sized clots to fill my uterus, which distended to the point of nearly rupturing. But my blood thinners caused me to bleed out once my uterus stretched out so much. I ended up needing 4 pints of blood and a dilation and curettage (a procedure used to remove tissue from inside of the uterus). I was put on bedrest and fortunately managed to not lose my uterus. Just another adventure with APS!

I joined an APS support group, which has really helped me manage my stress. Many people have a lifelong battle with blood clots. For me, the doctors think it should only be an issue during and after pregnancy. Heart disease runs in my family. Both my dad and my grandma have high cholesterol and have had strokes. My cholesterol level is normal, but it does make me aware of what I need to do to stay healthy. I live an active lifestyle, I drink a lot of fluids, and I eat healthy. I stay off of hormonal birth control as that could increase my risk of clots. And I know now to advocate for myself when something doesn't feel right. I knew something wasn't right when I was having all of the clots, but my local doctors weren't doing anything. I insisted on getting referrals to specialists and ordering more tests to figure out what was wrong. And I'm glad I did. I now have two 2nd healthy babies and a happy, healthy family!

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