“I’ve always had ailments my whole life. I remember being a kid and complaining to my mom that I have arthritis. Looking back, that is definitely not normal for a kid. As I grew older I was known as the flakey friend. Always staying home because I didn’t feel good. It wasn’t until I got pregnant with my son at 25 that dormant sickness reared its ugly head.
Having a pretty normal pregnancy, at 31 weeks I woke up with what looked like someone took a camera flash to my eye, that never went away. I called my OB because something just didn’t feel right. The OB sent me straight to the hospital when they saw my blood pressure was 220/150!
At labor and delivery, I was still in denial and thought I’d be coming home soon, they ran blood tests which showed I was in liver failure and my platelets were extremely low, I had HELLP Syndrome and the baby needed to come out NOW or else I’d die. They wheeled me into the operating room, strapped me naked to the bed as I watched them shaking the giant bags of blood ready for a transfusion. It was traumatic to say the least. They put a mask over my face and knocked me out.
I woke up being wheeled to the ICU in the worst pain imaginable. So bad that words couldn’t form and all I could silently mouth was ‘How’s my baby?’.
He was great, perfect just small. 3 lbs. even.
While my baby, Miller, grew in the NICU, I went through more complications. I was readmitted weeks later from infections, feeling just sick.
Three weeks postpartum I started getting strange symptoms. Partial blindness in my right eye, extreme pain running down my arms, double vision. I went to a neurologist who ran a plethora of tests and saw I had extremely high Antiphospholipids.
They sent me to a rheumatologist who diagnosed me with systemic lupus erythematosus and antiphospholipid syndrome. Lupus, I knew that one, and it all made sense with getting sick my whole life, but antiphospholipid syndrome was a new one for me. Both autoimmune diseases, ‘Sticky blood’ is another name for it, a blood clotting disorder that can cause major clots, pulmonary embolism, miscarriages, stroke.
Doctors put me on Plaquenil, a mild medication to control lupus and baby aspirin. I got better, felt normal for a bit.
I had another child, with the help of blood thinners throughout my pregnancy, but everything was okay.
Then in January 2017, I all the sudden started feeling not right again. Headaches plagued me, and strange symptoms started creeping back. Throughout all of the year, I suffered from partial blindness, double vision, numbness in my face, excruciating pain down my arms and across my back, vertigo and confusion.
I went to the hospital and was even admitted when they saw my troponin levels were elevated. Troponin is an enzyme released when your heart is in trouble, mostly seen in heart attacks. I was hoping to get some answers but the neurologist on call insisted it was a migraine. I was frustrated and angry. I know my body and I know that this isn’t a migraine!
My insurance tried to send me to that same doctor for a follow up but when I was waiting in the room his nurse came in saying he refused to see me! He remembered me from the hospital and didn’t agree with the fact that I wouldn’t take a migraine as the answer. I left his office in tears.
I needed a doctor to believe in me.
Thankfully my rheumatologist at UCLA, Dr. Grossman believed in me. She knew I wasn’t crazy and that my Sed rate (inflammation levels) were out of control crazy high.
I started getting splinter hemorrhages on my nails. Little bleeding lines on the tips. Weird stuff!
Dr. Grossman pushed for me to see a cardiologist because she knew something was off. I was on high dosages of steroids and was feeling way better, stable, but my labs were still not great.
In January of 2018, a whole year later I had a TEE done, trans esophageal echocardiogram, where they put a transducer down my throat to look at my heart from a different angle. Sure, enough that was the test with all the answers.
The cardiologist found vegetations in my heart and on my mitral valve. My heart was inflamed, the inflammation had caused my mitral valve to now have a permanent leak in it. I was diagnosed with a very rare complication of lupus and antiphospholipid syndrome called Leibman Sacks endocarditis.
I have been having mini strokes this whole time.
Tiny pieces of those ‘vegetations’ were breaking off and entering my blood stream. They would travel to my brain causing TIAs or mini strokes.
The doctors immediately put me on Coumadin and methotrexate, a chemotherapy medication to cut my immune system down, so it will stop attacking my heart.
I will be on blood thinners my whole life now and possibly my chemo medicine. I will forever have a leak in my heart valve. All of this because doctors look at a fairly young, healthy looking female, and immediately want to conclude that she has a migraine or something like anxiety. It couldn’t possibly be something more serious.
I am happy that I stuck with what I knew, that there was something majorly wrong. Everyone needs to advocate for themselves and don’t take no for an answer, it very well could have cost me my life.”
This story was submitted to Love What Matters by Nicole Barks. Submit your story here, and subscribe to our best love stories here.
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