Put Your Health First: Elaine’s Story

Put Your Health First: Elaine’s Story

I am a married 39 year old mother of two.  A year ago my busy life was put on hold when I developed a blood clot in the renal vein of my left kidney.  I started feeling dull pain in my lower back at work, and I felt winded and tired.   I work full time as a civil engineer and spend a good portion of my day on my feet.  I remember saying to my coworkers that I just needed to sit down, which is very unlike me.  The pain got more intense each day, although at this point I had no idea I had a deadly blood clot.

At the time I was juggling many things, so I didn’t take time to take care of myself.  I was busy planning a retirement party, getting organized for a camping trip with my Girl Scout troop and caring for my aging and quite sick dog.  Days later the pain moved from my back to my lower abdomen.  I look back and now wish I had not waited so long to go to the emergency room.

I was concerned that the pain was not subsiding, so I went to a walk in clinic that weekend. The doctor thought my pain was due to a cyst on my ovary.  On Monday I called my GYN, who did not think I had an ovarian cyst because I was on hormonal birth control.  An ultrasound showed no sign of a cyst, so they sent me on my way.  They never investigated whether any clot was forming related to the hormonal birth control I was taking.

The next day I went to my internal medicine doctor, where my urine test showed elevated levels of protein and blood, so an abdominal CAT scan was ordered.  I had to wait until the next day for the scan, and by then the pain was so bad my husband had to drive me to the appointment. The scan revealed the blood clot in my left renal vein, the major vein of the kidney.  I was admitted to the hospital for 10 days where I was put on heparin, and dozens of blood tests where taken.

I did not have a clotting history, and my health was good to that point in time.  It is still unknown why my clot occurred, although doctors think it was a combination of factors.  I was on a hormonal birth control ring.  Doctors also noted compression that thinned my renal vein and made it more prone to clot.  Blood testing revealed that I have anticardiolipin antibodies and lupus anticoagulant, antibodies that attack plasma proteins in the blood, and see plasma proteins as foreign bodies or threats, leading to a higher risk of clotting.  An antibody associated with Sjögren’s syndrome was detected that may be another contributing factor to the clot formation.  However, my rheumatologist is reluctant to diagnose me as having any autoimmune disorder, since I do not exhibit the full spectrum of classic symptoms related to either Systemic Lupus Erythematosus or Sjögren’s syndrome.

I will be on blood thinners for life and the specialists do not foresee that the clot will ever dissolve.  My kidney function is good for now, but I need to check it regularly.

I also have pelvic congestion syndrome, a condition associated with varicose veins in the pelvis. These varicose veins developed because my left renal vein is blocked by the clot, and drains blood into my ovarian vein.  Blood engorgement in the vein near the nerves causes pain, pressure, and heaviness in my pelvic area lasting about 10 days a month around ovulation. It is ironic that the hormonal birth control that likely added to my clot risk was intended to prevent any pain from this pelvic congestion because it stops ovulation. I can never take hormonal birth control again, because it and the antibodies in my blood pose added risk for me to develop another clot.
I have never met anyone else who has a blood clot in their renal vein.  I have learned that it is essential to put my health first, no matter how busy life is.  I waited over a week before getting answers; this put my kidney function and life at great risk, but I am fortunate to be a survivor.

Take Home Messages

  • Listen to signals your body is giving you to stop and seek help
  • Take time to take care of yourself
  • Hormonal birth control is a risk factor for blood clots
  • Put health first
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