In May of this year Max, gave me factor for the first time.
I was getting ready for HFA’s first regional Gears for Good bike ride in New Hampshire. In preparation, I was out riding my bike ten or more miles every chance I got. Max would often drop me in one spot and then pick me up later. After one of these training rides I was having trouble talking. Max kept telling me there was something wrong, but nothing felt bad so I ignored it. I got up the next day and drove an hour and a half to meet some friends in the hemophilia community for another practice ride of 24 miles. By the end of the day, I found that I couldn’t type and some things that were normally simple were difficult — for instance I had to use my GPS to travel home, a route I had driven many times before.
After two days, Max finally convinced me to see a doctor. On the morning of Memorial Day, I arrived to work a few minutes early, stopped in the ER and explained to them that I was having trouble talking, that numbers were pretty jumbled and typing was difficult. Within half an hour I had had a CT scan and was in an ambulance on the way to Dartmouth Hitchcock Medical Center.
I was diagnosed with a “left intraparenchymal hemorrhage”, which means I was in the midst of a brain bleed. Because of my hemophilia carrier status with levels between 42% and 46% factor VIII, the doctors in Neurology wanted my levels closer to 100% for at least a week. Thus, at 56 years old I got my first-infusion of clotting factor.
I spent three days admitted to the Neurology floor, reading a lot and still mystified that I could feel fine but be in such danger. I had a Magnetic Resonance Venography (MRV), which is the venous version of an MRI, and got poked, prodded and asked a lot of repetitive questions like “What day is it” and “Can you feel me touching you.”
On my second day in the hospital I admitted to Max, “You were right!” He said that, in this case, he wished he hadn’t been.. He came to visit me and I saw worry, frustration and relief on his face. All the things I have felt about him time and time again. Talk about role reversal…
I was released from the hospital with the requirement that I continue to treat with factor for four more days. When asked if I’d be able infuse at home, our hemophilia nurse chuckled and replied, “There shouldn’t be any problem!” I didn’t hesitate to ask Max to do my treatments. I knew I was in good hands. Sometimes the things we teach them have benefits we never expect.
Shortly after this happened, Max and I were discussing how it just never occurred to me that I could get sick or hurt. “I take care of other people,” I reflected. He called it the “invincibility syndrome.” He was referring mostly to those of us who are caregivers for children with medical issues. It’s like we feel we’re immune to sickness because we focus so much on our kids and their specialized needs. And again, he’s right. All the time I was in the hospital, and even now while I’m limited with activity, I keep thinking “I don’t have time for this!” How often do we lose sleep, neglect our own health or not eat right because it just doesn’t fit into the schedule of taking care of our kids?
It’s been a few weeks and I’m waiting for a follow up angiogram to see if they can find a reason for the bleed. I’m still on limited activity, which is making me crazy. No kayaking, no riding, no lifting. I still mix words up sometimes and if I get over heated or do too much I get really tired. I forget things that I should know but, all in all, I’m doing pretty darned good. I guess if I had to have a thing like this happen I am very lucky it has been a relatively mild event.
My hemophilia family has stepped up and given me love and support. Although I couldn’t ride one hundred miles for the Gears for Good New Hampshire event, I was still able to participate by running the rest stops. It was important to me that I be a part of it. . A dear friend in the hemophilia community, who I like to call Max’s “hemo dad,” brought him up on Saturday and then rode in my place on the final day. There are a few special moms that have been keeping my spirits up with love, laughter and sarcasm. Everyone at the ride, whether a new friend or an old one, encouraged me to stay positive. My hope is to be able to ride in the West Virginia to Washington Gears for Good in September. Once I get the okay to get back on the bike, you may see me riding everywhere!
Here’s what I learned from this whole experience:
- We are not invincible. We do get hurt. We do get tired and we do get sick.
- Our kids are pretty smart. We’ve taught them the right things and perhaps we should listen to them now and then. They have been paying attention. As they get older, they have much to offer us with their experiences. It’s okay to let them help.
- This community, my hemophilia family, is amazing. But I guess I already knew that – even a brain bleed couldn’t let me forget it.
Maryann and her 21 year old son, Max, live in New Hampshire.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.