My PE Was Linked To Protein C Deficiency: Michael’s Story

My PE Was Linked To Protein C Deficiency: Michael’s Story

During the summer of 2008, I started feeling lightheaded when I walked up stairs or tried to lift something heavy.  This was a strange and new experience for me, since I go up and down stairs at work or at home about 30 times a day without effort.  I was then 41 years old and in decent shape.  I played racquetball twice a week, was rarely sick and never spent a day in the hospital. I wasn’t sure what to think about this and figured it would go away.  Any other time I had any symptoms, I just went about my business until it went away.  I figured that it shouldn’t be any different this time.

After three days, I decided to see a doctor because my symptoms were getting worse.  I thought I might have an ear infection that was causing my lightheadedness. I found out quickly that it wasn’t an ear infection, because my doctor admitted me directly to the hospital.

The doctor’s first suspicion on my admission was a pulmonary embolism (PE), and she was right.  The scan showed blood clots affecting every lobe of my lungs. The doctor was surprised I was still upright. Needless to say, I was admitted, and began my first ever hospital stay.  Five days later I was discharged home when my INR level was regulated and my condition stabilized.

I learned that the standard treatment for a first time blood clot patient is blood thinners for six months, when the blood clot is presumed to come out of nowhere, and testing for blood clotting disorders is negative.   All my testing in the hospital was negative, but because of the extent and severity of my clots, I had a hard time accepting that this was a one-time event without any other identifiable causes or risks.   After doing research and talking to people, it seemed to me that everyone had an explanation for their clot; whether it was birth control pills in women, recent surgery, prolonged travel, or something else.  I could not identify any specific trigger, but still felt something was wrong.

When I discussed my concerns with my pulmonologist, she said there is additional testing they can do for blood clotting disorders.  I agreed to this testing, and found out I have Protein C deficiency.  Protein C balances pro-clotting and anti-clotting proteins, so when there is less produced in the liver (deficiency), there is a higher tendency to clot.  I found out that it is a genetic blood clotting disorder that is present in less than 0.5% of the population.  Relative risk for DVT/PE in people with Protein C deficiency is about 7 times that in the general population.  Since risk increases with age, I am more likely to have a blood clot recurrence, so will take blood thinners for the rest of my life.

I am fortunate that blood thinners have been easy for me to manage.  I just have to remember to take my medication and go in for my monthly INR.  My warfarin dose has been stable and I’ve had almost no side effects.  Surprisingly, I do not look at my life much differently now than before, and I have very strong faith that God is taking care of me.

My advice to others is two-fold.  1) Even if you have never been sick before, go to the doctor when you don’t feel right, in my case, when I felt lightheaded.  You never know what it could be.  This was the most important lesson for me!  2) If something is telling you that something does not seem right or that you need more information, encourage your doctor to work with you to find out what might be the cause.  In my case, I found out that I had a blood clotting disorder, which may have gone unnoticed, if I hadn’t wanted to investigate the reason for my clot.  Each of us is different, and standard treatment varies according to individual history and conditions.

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