“Don’t believe everything you think” – Unknown
After my pulmonary embolism in July 2013, I was scheduled to meet with my hematologist. I remember walking into her office thinking “Why am I even here? I feel fine, and I know I am healthy.” I exercised daily, started each day with a green smoothie and was the ideal weight for my 5’10” frame.
Sitting across from me, she looked down at my file and then at me. “Karen, you tested positive for a Lupus Anticoagulant. This is what caused your PE.”
I felt the ground give way. “So, I have Lupus?”.
The doctor told me that no, I did not have Lupus, however, my test results showed that I had Lupus anticoagulant – antibodies that caused an increase in inappropriate blood clotting – which led to the embolism.
I didn’t understand. I was healthy and there was no history of pulmonary dysfunction, Lupus, DVT, or any unusual health issues in my family. I was a regular platelet donor. How did I not know this?
“But how? Why?” I asked my mind racing and wondering.
She was quick to reply and tell me that my body had been fighting a virus
“But I haven’t been sick in a while. I can’t remember the last time I had a virus.” I adamantly stated.
“The virus was dormant. You could have had it last month, last year or ten or more years ago. We have no way of knowing” she said to me very matter of fact.
I left her office with a 6-month prescription of Xarelto in hand thinking that everything was going to be just fine; I would take medication and have my blood tested every three months to monitor for clotting. I had my family to think about, as well as figure out what I would do about work and just continue through life.
Little did I know that this was just one more step forward in my journey of knowledge, courage, growth, and change. Little did I know that what I believed about my health was the furthest from the truth. Little did I know that it would take me nearly 4-1/2 years to find out the reason why I was ill. Little did I know that three months later I would find out my very healthy mom would be facing the battle of her life.
What I did know is that perception is not always reality.