Persistence Is Sometimes Needed to Get a Correct Diagnosis: Theresa’s Story

Persistence Is Sometimes Needed to Get a Correct Diagnosis: Theresa’s Story

I was 30 years old and 6 months pregnant with my first child when I developed an acute deep vein thrombosis (DVT).  I had no prior knowledge of clotting disorders and had been on birth control for 10 years before I conceived.   It was a Thursday night when I first felt a tingling and slight soreness in my left leg.  By the next morning, my leg was slightly swollen and reddish in appearance.  A co-worker suggested I call my obstetrician, who had me come to his office that day and sent me to the ER for an ultrasound when he saw my leg, although he said it was probably nothing.  They did an ultrasound in the ER which showed no clot and sent me home.

The next day, my leg was more swollen and redder.  I started limping and the pain was worsening.  A friend of mine who is a resident at a different hospital stopped by that night, and she felt I had classic symptoms of a DVT and called my hospital to give her diagnosis and sent me back to the hospital for another ultrasound.  The ultrasound was done as well as some blood work, and once again the doctors in the ER claimed that no DVT was evident, although I was diagnosed with superficial thrombophlebitis, for which I received no treatment.

Two days later, I could barely walk because I had such severe leg pain, and my leg became grotesquely swollen and purplish in color.  I called my obstetrician once again, who was on vacation, so I was advised to contact my primary care physician (PCP), who told me to go again to the ER.  I asked to be seen by a vascular physician, but I was told they could not see me without a referral, and they were unmoved by my tears while I was on the phone.

So on the following Tuesday afternoon, with the help of my sister, I made my third visit to the ER (in retrospect- I should have just gone to a different hospital).  During this visit, they took more blood, did not do an ultrasound, and diagnosed me with sciatica.  The nurse looked at me and commented “Welcome to pregnancy!”

My leg pain was so intense that it made me cry, and it also kept me from sleeping- my leg was mottled, swollen, and purple.  My sister became very angry with the staff in the ER and called my PCP to demand that he see me.  He diagnosed me with cellulitis via phone, prescribed me an antibiotic, and scheduled an appointment for Thursday, one full week after my first symptoms.

My pain was excruciating, and I was scared for me and my unborn daughter, not to mention extremely frustrated because I could not get relief from my symptoms, due to the series of missed diagnoses.  On Thursday, I was still unaware of what was wrong with me.  I was finally seen by my PCP, who thought that it might be a problem with my hip, so I was sent to his hospital, a different one from the previous) and had an X-ray and lab work done.

My PCP called me later that afternoon and said my X-rays were fine but my blood work made him curious, a point that he did not elaborate.  He scheduled me for an MRI the next morning.  The radiologist read my MRI while I was in the machine and insisted on an immediate ultrasound-that he did himself.  It showed that I had an acute DVT which had probably started in my abdomen and moved into my femoral artery.

I was told to go home, not move, and wait until my doctor could consult with a vascular surgeon.  The surgeon put me on Lovenox (a blood thinner) which I had to inject into my stomach twice a day for the remainder of my pregnancy.  I was told that I did not need any surgical intervention.

After my pregnancy, I continued on blood thinners, but was switched to Coumadin for 3 more months, and now I consult with my hematologist every 3 months.  My tests showed no clotting disorders, although there is a family history of DVT.  My grandmother had a DVT and pulmonary embolism (PE), her brother had a DVT, and her sister died after giving birth to her second child from a PE.  My hematologist thinks the clots may have been due to the hormonal changes in pregnancy.  I wear a compression stocking 12 hours a day on one leg to prevent complications of DVT, and take low dose aspirin daily, which my hematologist added “just to be safe.”

I can no longer take hormonal birth control, and I must consult with my doctor when I fly or have surgery, and if I become pregnant again, I will have to take Lovenox throughout any future pregnancy.

My DVT experience was terrifying and frustrating.  I cannot understand why it took a series of doctors and repeated ultrasounds to diagnose my DVT, especially since my symptoms were classic.  One positive note is that my daughter was born healthy, even though I did have some further complications. A week after her birth, I began to hemorrhage, went into shock, had to have multiple blood transfusions, and surgery to remove the remains of the placenta left in my uterus after her birth.  Fortunately, she and I are both doing very well, and my daughter, Anna, is now 11 months old.

Take Home Messages

  • Pregnancy makes blood more likely to clot (“hypercoaguable”), especially toward the end
  • Family history of blood clots is significant in terms of individual risk
  • Hormonal based birth control increases risk for blood clots
  • It is not uncommon for DVTs to be diagnosed as something else-in this case, sciatica and cellulitis, and persistence is necessary at times to get a correct diagnosis
  • Diagnosis via phone is not as reliable as in-person assessment
  • Aspirin has no effect on treating DVTs
  • Risk for clots increases with any travel longer than 4 hours, especially if traveler does not move around or do heel toe exercises while seated
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