I’m so excited that the time has finally come for me to be in college, on my own, making my own decisions without direct input from my mom. However, I can still hear her advice even when she is not around.
- Contact campus emergency, not 911. The officer on duty was able to access my emergency plan. She called an ambulance and provided me with a taxi voucher to return to campus once I was discharged from the hospital. I left the campus via ambulance at 1:00 am.
- My hematologist spoke directly to hospital personnel in the emergency room and they were expecting my arrival. Unfortunately, the medical staff was not very familiar with hemophilia. However, I remembered my mom always stressed the importance of me being knowledgeable enough about my diagnosis to be an advocate for myself. I was able to instruct the nurse on how to mix and infuse the factor. The nurse had orders for an x-ray and to draw factor levels. I remember a situation when I was younger that the ER staff wanted to draw factor levels and my mom refused. I agreed to the x-ray. I expressed to the nurse that I infused on a prophylactic schedule and checking levels immediately following that type of trauma was not necessary. They also wanted to keep me overnight for observation. I did not want to stay overnight at a hospital for a toe injury so I told the nurse that 24-hour observation was not necessary and I would be willing to sign anything she needed refusing their recommended treatment. It felt so empowering to make a decision alone about my treatment.
- I was discharged from the ER and returned back to campus at 3:08 am. When I called my mom couldn’t believe that I had been transported to the ER via ambulance, treated and returned back to campus in two hours. Modified attendance is part of my academic accommodation so before I went to sleep, I emailed my instructors to inform them that I would not be in class the next week. The office of accessibility was also contacted because my injury resulted in difficulty walking and my dorm room is located on the 9th floor. When I woke up it was 1:30 pm. I was contacted by the director of food service about my meals and my meals were delivered to my room.
- Not only did my accessibility counselor follow up with me, but my mom informed me that because she has permission to discuss my records, she was also contacted and informed of the incident. My counselor asked if there was anything else that could be done to assist me.
Well, I had a bleed at school that required emergency treatment. Not only was it a school holiday but it was in the middle of the night, 12:50 am to be exact. As I was doing some strength training in my room, I injured my toe. The entire foot was swollen in a matter of minutes, I was in extreme pain and could hardly stand. Of course, my first reaction was to infuse but I wasn’t able to administer hardly any of the dose (my veins kept blowing). As I sat on my bed, I decided to call my mom. Not for her assistance but just to let her know what was going on. She has always said that she prefers to be in peace, not pieces. In other words, try not to make her worry any more than she already does. After speaking to her, I called my hematologist. We decided that going to the emergency room was necessary. I called my mom back and informed her of the next steps. She reminded me of the emergency plan that was put in place during orientation with the office of accessibility. There was nothing for me to figure out. I just followed the plan.
Planning ahead and having a documented emergency plan in place was well worth the effort. The plan was followed as written and most of all, the plan worked. This incident confirms, “I have hemophilia; hemophilia does not have me”!
Michael Joshua, age 19, is from Baton Rouge, Louisiana. He attends Loyola University of New Orleans. My major is political science; he intends to become a successful lawyer.