Six years ago, I found out the hard way that none of us are “just” carriers. That was when I had a pretty significant brain bleed.
Here’s what happened. I had been riding my bike one day, I was training for the New England Gears for Good ride. When I got done, my son picked me up I realized I couldn’t talk. I knew what I wanted to say but the words were jumbled and slurred. I attributed it to being tired. There was no pain, no headache and being a lifelong migraine sufferer, I might have been more alert if there were. This was on a Saturday. My son was concerned but I’m still mom, so I overruled his concerns.
The following day I met some friends in a town about 30 miles from home to ride a rail trail. We rode 24 miles that day and I mentioned that talking was hard, but I also was quiet and took a long time speaking so it wasn’t apparent. Going home from a place I had been numerous times I needed my gps. Still, no pain. No red flags.
The next day was Memorial Day, I worked at our local hospital as a phlebotomist, so my son suggested that I should stop in the ER on my way to work and just see what they thought. I punched in, got my lab coat and walked over to the ER to talk with the doctor. In the process of explaining what was happening, by now I couldn’t find certain keys on the keyboard and I had trouble using the keypad to get in the ER door, I see him watching and listening to me. Instead of him saying I was probably overtired he said, “why don’t you go take your lab coat off, we’re going to do a CT scan.”
Within twenty minutes I was in an ambulance on my way to Dartmouth Hitchcock Medical Center. I had a bleed in my brain resulting in a hole about the size of a quarter.
Three days in the neurology ICU, and MRI of my head, visits from the hemophilia team and a plethora of doctors and residents the diagnosis was acute intraparenchymal hemorrhage. Brain Bleed. The cause? After an angiogram and multiple other tests that only found everything normal, the diagnosis was that in all probability after years of overuse of Excedrin for migraine headaches, the combination of my own low factor levels and the salicylates in Excedrin caused a spontaneous bleed.
It took several weeks to be able to speak and think clearly. It only took moments for me to realize how dangerous it is for any of us that are “just” carriers to ignore our own diagnosis. I was a mom, I wasn’t bleeder. I took care of other people, I wasn’t to be cared for. How quickly that all changed.
Now we’re all more aware and more likely to speak up than we were six years ago and we’re also more likely to be heard. I am grateful for my son and his ability to care for me, it shows me we have raised him well. Because it is the whole bleeding disorder community that did this, we’ve raised a generation of caring, intuitive people.
As I was writing this I went back over the reports to make sure I have the facts right. I was reading the notes from the first follow-up visit after the incident. The last paragraph of the report is still true, it also made me smile:
There are “No other neurological deficits. She has good strength. No numbness, tingling, it is mainly her speech that was affected, and she is a bit frustrated by the whole situation, but she also tells me she is not going to live her life worrying about whether this is going to happen spontaneously again or not.”