Jane's Story

Editor's Note: NBCA recently received a patient story from a young woman in Mexico who prefers to stay anonymous, even as she was eager to share her experience.  The story underscores the challenge of accurate and timely diagnosis of clots going beyond the US, and the impact of the uncertainty resonates world wide.  To honor the author's wishes she is referred to as "Jane" in this article.

It’s around 4:00 AM, and I’m still awake.  Why?  Because I am 20 years old and want to feel normal again and I can’t make what I am dealing with go any faster. My story started awhile ago.  Unknowingly, I began using a well known brand of birth control patch that was so prominent that it seemed as safe as an aspirin.   I did not seek any medical care, because I did not think there was any danger in using this patch.
 
I attend University, so I climb stairs every day, even though I don’t really feel like walking too much.  I started noticing back problems three months ago, and I was complaining so frequently that I thought I was becoming a hypochondriac.  I also noticed that I had trouble breathing and my right chest started hurting.  When I told my parents that my right lung was hurting, they laughed it off, and said that I should stop smoking and start exercising.  
 
I began to believe that I was becoming a hypochondriac.  I did not quit smoking, and decided that I wouldn’t stop until something serious happened to me.  All of a sudden, I started sweating constantly and got tired easily when I walked short distances, but the pain in my right lung stopped, so I more or less forgot about it.
           
I started school again after Spring break, but an influenza outbreak came, and school was suspended for a week and a half.  During that week, I started having a pain around my pelvis area and it spread all the way to my right knee.  I wondered if I was imagining the pain, even though I knew I felt pain.  I had trouble walking and going to the toilet.   My parents decided to take me to the hospital at that point, since it was almost impossible for me to walk due to the pain.
 
A nice young doctor checked me and she diagnosed my symptoms as colitis.  She gave me medicine for pain and one to make it easier to move my bowels. The pain in my leg disappeared, so I was relieved and happy.
 
When I went back to school the next day, I had to climb stairs to the top floor, and noticed that my right leg felt funny, and I don’t mean funny in a good way.  It felt as if I had done a lot of exercise.  Once again, I told myself that I was a hypochondriac, and that everything was most likely fine.  So I kept walking, and went to the library with a friend.  Again my leg felt different, and it did look a bit swollen to me, but my friend told me that my legs looked the same, and that I was a hypochondriac.   I began to wonder if what I felt was real.  To be honest with you, I knew there was something wrong, but I was feeling so many different symptoms that I thought I was going crazy.
 
Three days later, I woke up with the same pain around my pelvis, and realized that I had forgotten to take the medicine for my colitis.  I took my medicine and started watching TV.  About 30 minutes later, my leg looked swollen again and I asked my mom whether she noticed it.  She told me that my leg was fine without really looking at it, because she was probably tired of hearing me complain recently of so many symptoms.  I took a shower, and thought my leg was swelling up even more.  So I asked my father what he thought, and he agreed that it looked swollen, and also said he did not like the color of my leg.   It was Sunday, so he said he would take me to the hospital after church.   As it happened, we went right to the hospital, since my leg got worse within the next few minutes, and I was very scared.
 
The doctors first thought I had an allergic reaction to the colitis medicine, even though it ultimately turned out that I did not have colitis.   My mother mentioned that she thought what I was experiencing might be circulatory and a doctor agreed.   A doppler showed that my leg had a clot from my belly button all the way to my knee.  When I heard this, I truly felt frightened, because the doctor told me not to move, sneeze, cough, sit, stand, or go to the bathroom, because any movement might cause the blood clot to move and end up somewhere else.  That same day I had a filter (umbrella) placed to prevent any clots from travelling to my lungs, and this also allowed me to move again safely.  Not surprisingly, the original pain in my lung was revealed to be a pulmonary embolism anyway.
 
The clot was removed almost completely with a catheter that released anticoagulant directly to it.  About 12 hours after this treatment, the clot developed again, and was the same size and in the same area.
 
That’s where things stand at this moment.  I regret that I ignored my symptoms in the hope that I would feel better, instead of realizing that I was not feeling normal or well.   I was lucky to be given a second chance on life.  My family is with me and is my best source of much needed support.   I also realize that it is wise to seek care as soon as something does not seem normal.  May 10, 2009 was my birthday, and I celebrated it not only as the day I was born, but reborn.

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