Brianne Paisley is pregnant and has Protein C deficiency. She had a large DVT in her groin during this pregnancy for which she self-injected with low molecular weight heparin, but is now awaiting the birth of her second child.
My name is Brianne Paisley, and I want to share my story with anyone and everyone because it may help other people faced with my situation. I gave birth to a beautiful healthy baby girl in 2008. I thought I was the perfect poster child for a healthy woman at that time. At my 6 week post-delivery check-up, I inquired about using birth control pills. My family doctor asked routine questions about history of blood clots in my birth family. My brother had his first blood clot at 14. He is now 27, and has had multiple deep vein thromboses (DVTs) and pulmonary emboli (PEs) since.
My family doctor said he would need to run some tests for blood clotting disorders. I left his office, and was feeling a little upset. A couple days later, he called to tell me I was positive for Protein C Deficiency, which for me was bad news. The doctor told me it is inherited, and I will have this blood clotting disorder for the rest of my life. He also suggested that I inform my family, so that they could consider whether to be tested. Protein C deficiency occurs in about 1 in 2,000-5,000 people, and of those, about 2-5 out of 100 develop a DVT or PE.
I informed my family, including my brother, who tested positive for Protein C deficiency. I was in complete denial, and went on for 3 years without going to see a hematologist, as recommended by my family doctor. My brother was hospitalized with recurrent DVTs and PEs, related to his Protein C deficiency. At this point, my family forced me to go to a hematologist.
The hematologist said that since my blood was drawn only 6 weeks after giving birth, he believed that the test for the blood clotting disorder could be a false positive. He explained that Protein C decreases during pregnancy, so he suggested a re-test. I realized on the way home that he never ordered the re-test, so I did not have one, and denial of what might be happening stopped me from calling him to write the order.
Six months later, my husband and I decided it was the right time to add an addition to our family, and I found out I was pregnant in January 2012. After discussing my history with my OBGYN, she recommended I that I see a high risk OBGYN specialist for a consultation to discuss taking a course of low molecular weight heparin injections. The appointment was two weeks later. During that two week interval, I noticed my hip felt as if it was out of place and painful, which didn’t surprise me, since I had the same symptom during the first three months of my previous pregnancy.
The last time I felt the hip pain, it took a couple of days for it to go away, so I waited it out. I went for my appointment with the high risk OBGYN. As part of my history, I said I never smoked, I took hormonal birth control pills for 2 years, split over 2 separate years, and I had no complications during my first pregnancy. I did tell him about my brother’s history of blood clots and Protein C deficiency.
During the next two weeks, I was able to do less and less. I now felt as if I had a pulled muscle in my groin rather than feeling that my hip was out of place. I am a nursing student, so I know the signs and symptoms of a blood clot; pain, warm, red, swollen around the area. However, I only felt pain. I also felt short of breath, but blamed it on being pregnant, and being out of shape.
The thought that I might have a blood clot was in the back of my mind, but I also thought I might be a hypochondriac who was imagining symptoms, since I had just been assessed by two specialists. I noticed some purple discoloration in my legs one night as I entered the shower. I put heat on my pulled groin muscle, which did nothing to relieve the symptoms.
My pain was so intense that I stayed in bed for the next couple of days. I was trying to wait it out to go to the doctor the following Monday, but I cried all day Sunday. When my brother called, he asked what was wrong. I explained the pain, and he told me to get to the ER immediately, because he thought I had a blood clot. He knew the drill.
The doctor in the ER didn’t think I had any blood clots, and after palpating my groin for what seemed like an hour while I screamed in pain, he told me it was a hernia, and I’d be free to go home soon. My only symptoms were extreme pain, and a slight discoloration in my legs whenever I stood. However, I was lying down in the ER, so the discoloration was not evident.
Thankfully, my high risk OBGYN asked the ER doctor to do an ultrasound of my legs, when she heard about my leg discoloration. The ultrasound showed multiple blood clots, and that the ones in my femoral vein (in the groin) were blocking 98% of blood flow. Even though I had some shortness of breath, I was not tested for a PE, because I was pregnant and the treatment would have been the same.
The ER doctor told me that my symptoms were serious, and transferred me to a high risk hospital immediately. After 2 hospital stays, and some recovery time during which I am taking low molecular weight heparin injections twice a day throughout my pregnancy, I am happy to say the pain is easing and I am getting better at self-injection.
I often think of what would have happened had my brother not pushed me to go to the hospital, and if I was someone who was unaware of signs and symptoms of a blood clot. Because I needed a push from him to go to the ER, I want to get my story out there, so people can know that a DVT may not always show all the usual signs and symptoms, or only be in the leg.
Follow your gut, and never wait too long. Persist until you are satisfied with the treatment you get. You are the only one who knows how you feel, and pain is a subjective symptom, not something the doctor can see, touch, or feel.
I am expecting our baby in September 2012, and am doing well.
Take Home Messages
- Denial can be protective when someone has symptoms that are serious, but it can delay needed medical treatment.
- Pregnancy is a time when there is a higher risk of blood clots.
- Injections with low molecular weight heparin are used to prevent blood clots during pregnancy for a woman with a blood clotting disorder.
- Blood clots in a young person, as in this patient’s brother, suggest possible presence of a blood clotting disorder in the family.
- Hormonal birth control increases risk for blood clots.
- It is not unusual for blood clots to be misdiagnosed, but it is more likely thought to be a muscle pull or strain rather than a hernia.
This personal story is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including the patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.
