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ADVOCACY PROFILE
The next morning, I was informed my admitting hematologist
was not the one I would see, and in fact, I most likely
would have a different hematologist every day, since they
were very busy and had to rotate frequently. I also wasn’t
guaranteed to see a hematologist from the HTC and would
probably be seen by hematologists who did not regularly
treat hemophilia patients. Consequently, the coming days
consisted of explaining my situation to the new hematologist
every morning, until I was finally able to get the message
across on the fourth day. My fifth hematologist was one from
the HTC. She listened to and trusted me, and she promised to
make a note for any other doctor who would see me.
Thankfully, I didn’t have to argue with anyone else about
my treatment, and I only spent a couple of more days in
the hospital before I was discharged. I’m happy I found a
hematologist who would listen to me, but I couldn’t help but
think of what could’ve happened had I not known myself as
well as I do or didn’t have the confidence to firmly tell a doctor
what I needed for successful treatment. Had I let them try
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a different bypassing agent, I could’ve had an unnecessary,
life-threatening reaction. Had I let them continue to test my
inhibitor levels, which are not very high because I haven’t
used factor IX since I was a kid due to my allergy, they might
have thought it was safe to try to tolerize.
It’s important to trust doctors. They studied for years to gain
an understanding of the human body and the medicine used
to treat its ailments, and patients should never take that
knowledge for granted. But every hemophiliac is different.
An understanding of the human body does not automatically
give someone an understanding of your body. Many
hematologists understand this, and different treatment can
sometimes improve your quality of life. However, in the event
that you find yourself in a situation like mine, it’s incredibly
important to remember that you are often the best person
in the room to explain the way your body works and what it
needs. Make sure you know what’s best for you, and never be
scared to fight for it! S