Brianne Paisley’s Blood Clot Patient Story

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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 I think 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 2000-5000 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 Emergency Room (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

  • Note the advice given by this patient at the end of her story.
  • 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.

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Author: admin

4 Responses to "Brianne Paisley’s Blood Clot Patient Story"

  1. Janice Kamenoff
    Janice Kamenoff Posted on November 28, 2013 at 3:59 am

    read this as daughter had same symptoms in groin area and was found to have clot in femur,she was having extreme pain in hip area thinking arthritis(family history on Fathers side,in early 40’s and now after test in Vegas,overnite in hospital.Hope that this can be controled for her!

  2. Claire
    Claire Posted on July 28, 2014 at 9:25 pm

    Thank you so much for your post… I am 24 weeks pregnant, with no family history of blood clots however i started getting cramp in my leg, as the pain was getting worse, I visited the doctor and was advised it was a DVT.
    I have to now inject twice a day with Clexane, I have been doing this for a week now and the pain is spreading round my groin area. First thoughts were to do with baby, however after reading this I am going to go back and visit my doctor.
    My advise to anyone is, if you have a pain more than 24 hours get it checked out!

  3. Doug
    Doug Posted on August 13, 2014 at 1:05 am

    Thank you for putting your story out there. I had my first DVT and Pulmonary Embolism when I was 27. The pain started in my calf muscle and I thought that I had pulled it. I waited until the following Monday to get to the doctor and by that time I could barely stand and the pain was unbearable. It never occurred to me that I had a clot because I didn’t know the symptoms. Luckily my primary doctor immediately recognized the symptoms and sent me to the hospital to get an ultrasound which turned out to be positive for a DVT.

    Despite the fact that I was also put on low molecular weight heparin injections and Coumadin I woke up with severe chest pain and shortness of breath a few days later. After going back to the hospital and getting a CAT Scan it was confirmed that I had a pulmonary embolism. Luckily there was no permanent damage. I was tested for every know clotting disorder and they all came up negative. Since no cause could be determined I figured it was just a freak thing that wouldn’t happen again.

    It has been more than 3 years since this incident, I am 31 and I had not had any issues since, at least up until last week. I was kept on Coumadin for a year but since no clotting disorder was discovered I was taken off of it. Starting early last week I started getting pain in my calf again similar to what had happened with the first DVT but the pain and swelling was not nearly as severe so I didn’t think it could possibly be another DVT. The pain persisted and I started getting short of breath so I finally went to the hospital mid-week to get checked out. As it turns out I had another pulmonary embolism. The pain for this was also not nearly as severe.

    The bottom line is that if you ever exhibit any of these symptoms get checked out immediately! Pulmonary Embolisms have a 30 percent mortality rate if left untreated. Never be afraid to get checked out if you exhibit any symptoms close to this! The symptoms of a DVT and pulmonary embolism vary greatly as my story illustrates. A DVT can be anything from completely asymptomatic to severe swelling and excruciating pain. I made the mistake of comparing my latest situation to the first and thought that since the symptoms weren’t as bad that I was ok. WRONG!

    I have been told that I must have some sort of clotting disorder that is currently undetectable. I will now be kept on a blood thinner for the rest of my life to help safeguard against this happening again. DVTs and Pulmonary Embolisms are extremely dangerous and should never be take lightly. If you or anyone you know exhibit symptoms even vaguely close to this go to the ER and get checked out. What’s the worst that could happen, they tell you that you are ok and have nothing to worry about?

  4. brianne Paisley
    brianne Paisley Posted on October 18, 2014 at 2:47 am

    So sorry for your experiences, all, I am glad you enjoyed my story. We are all in this together! Doug, my cousin who is 17 recently had multiple pe’s and had a stroke due to clotting, they ran all the genetic testing on her,and found nothing as well. .. He also said he believes there are generic test and disorders that they haven’t discovered yet as well. ..