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Doctors often overlook female problems caused by hemophilia. I have many examples of this concept, but few are as upsetting as when I almost ruined a family vacation in 1990.
Precancerous cells had invaded my cervix and needed removal. The procedure terrified me! I gathered several opinions, eventually landing in the office of a top-rated gynecologist in my hometown of Milwaukee, Wisconsin. He encouraged me to take care of the situation without delay. He offered to perform the procedure that day.
I asked about bleeding and explained my bleeding disorders. “Don’t worry, nobody has bled from this procedure yet,” he said. Afterward, I remember painful cramping and shaky knees, but nothing else out of the ordinary.
One week later, I boarded an airplane with family and friends to Lake Tahoe, Nevada. The bleeding started as soon as the plane landed. Could this be my period? I discussed the situation with my aunt, a nurse. We decided I had my period. Let the vacation begin.
On the second day, the bleeding picked up speed. I purchased several boxes of super plus tampons and maxi pads and tried to keep up with the bleeding as best I could. I tied a sweatshirt around my waist, prepared for a worst-case scenario.
On the third day, I experienced severe bleeding — like a pipe had burst. In the casino, the restroom was at the top of a flight of stairs. Feeling the blast, I ran up the stairs and into the bathroom. The bleeding was extreme. I deployed my super plus protection and hoped for the best. By the time I was halfway down the stairs, blood had soaked through to my jeans.
The dance of the stairs
The running up and down the stairs played out three or four more times. Each time, the bleeding would break through before I made it to the bottom of the stairs. Out of tampons and concerned by the blood loss, I knew I needed to make a run for the nearest hospital.
My aunt, the nurse, by the divine intervention of the casino gods, was at the bottom of the stairs. We had a conversation that involved me saying, “Even if this is my period, I need to go to a hospital.”
Mortified by my bloody jeans look, my mom begged me to go to my hotel room and change clothes. I told her there wasn’t time — we needed to go now.
We summoned a taxi, which in retrospect should have been an ambulance. My aunt asked the driver to take us to the nearest large hospital. I wouldn’t have thought of this, and I am grateful for her clutch thinking. Smaller hospitals usually do not stock the medication I need.
The hospital and the cheeseburger
By the time we reached the hospital, my jeans were blood-soaked to my knees. The ER waiting room was full of people. My bloody jeans not only got amusing looks, but they were also an immediate ticket to the front of the triage line.
I was minutes away from passing out due to the blood loss. Several doctors tried to stop the bleeding, but to no avail. Rolled gauze was packed into my cervix around a balloon to apply pressure. I was admitted to the hospital to receive a blood transfusion and medications for hemophilia B and von Willebrand disease (VWD).
A hematologist visited my hospital room. He asked why I didn’t tell them my bleeding disorders were severe. I said because they are not. My factor levels fluctuate. Most days, they indicate mild hemophilia and VWD. On this day, my levels were lower.
The bleeding stopped. Released from the hospital, I devoured the most delicious cheeseburger ever and slept until the next day.
Ready to join the vacation, I was embarrassed by the entire incident. I felt horrible for subjecting my mom and aunt to hours in the hospital. I was upset with myself for not acknowledging a bleed sooner and letting it become as severe as it did.
Afterward, my Milwaukee hematologist provided advice that has guided my life: “Nobody touches you without talking to us first. Nobody.” He repeated this mantra a few times, looking me straight in the eye to make sure it got through my thick skull. It did. I have taken his advice to heart ever since.
What did I learn? Never underestimate hemophilia or von Willebrand disease, even if they are “mild.” Be prepared. Travel with treatment and an emergency letter. Trust your instincts. Most importantly, if you find yourself in Lake Tahoe, Harrah’s has the world’s best cheeseburger.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.