It’s hard living with a chronic condition. Most chronic conditions have a mind of their own and operate on their agenda, not that of the person living with the condition. Yes, we may have some control over symptoms or treatment, but sometimes the condition is unpredictable and unexpected things happen. Hemophilia is one of those conditions. There’s often pain, inconvenience, stress, inability to work and caregiver strain, to name just a few obstacles.
During my 42 years of living with hemophilia, I’ve learned a lot about what I can do, what I can’t do, what I should do and what I shouldn’t do. But the greatest lesson I’ve learned is that although hemophilia is unpredictable and seems to have a mind of its own, it doesn’t have to define me. It doesn’t have to be the center of attention.
Growing up with hemophilia during the late 1960s and 1970s was a lot different than growing up with hemophilia today. Many issues I dealt with back then aren’t a problem for people with hemophilia now.
That said, there is the risk of developing or dealing with inhibitors, which wasn’t a concern for us back then. We had to deal with lack of readily available treatment and risk of joint damage, which often are less of a concern now, thanks to home infusion and the availability of factor to infuse at the first sign of a bleed.
A Different Time for Hemophilia
As a child living with hemophilia in the 1970s, I was forbidden to participate in any type of sports or physical education (P.E.) classes at school. This decree came mainly from my hematologist, but also my parents. Keep in mind that during this time, in order to treat my hemophilia, I would have to make a two-hour, one-way trek to the hospital to receive transfusions of cryoprecipitate. Although the doctors wanted me to be an active child, they felt I should stay away from sports or P.E. at school to minimize bleeding episodes.
My mom was a very strong woman. She didn’t let anything stand in her way. She and my dad wanted me to have as much normalcy as possible. We knew certain things could cause bleeds, like sports, so I steered away from those things.
I grew up on a 56-acre farm. We had horses, cows and other animals. My brother had a serious injury related to hemophilia from riding a horse and ended up in the hospital for nearly a month. Needless to say, my parents weren’t too keen on me riding horses. I did help take care of the animals, though. I also rode my bike and played outside. My parents did their best to help me feel like any other kid as much as possible. I knew my limitations. There were times when I pushed the boundaries, which sometimes resulted in bleeds.
For the most part, I’ve followed the philosophy my two wonderful parents instilled in me: Don’t let anything stand in your way. Sure, there have been many times when hemophilia was in control, preventing me from doing something or causing me pain, but in my mind, I only allow it to be a detour, not a derailment. Usually, if I have a bleed that stops me from doing something, I infuse and move on. I’ve never tried to live my life feeling like, “Why is this happening to me?”
I would have to say living with that philosophy has gotten me through all these years and prevented me from plummeting into deep depression. My philosophy has definitely been tested this past year, though.
Over the past three and a half years while working at the hospital, my bleeding episodes quadrupled. I had a major bleed in February 2010 and had a port placed in March. I then began prophylactic therapy.
The goal was to get me stabilized so I could return to my hectic life. I returned to work in late March 2010. Within five hours of being on duty, a bleed started in my hand. It was obvious that my duties as a nurse were causing me to bleed.
I scheduled an appointment with my hematologist. I knew what she was going to say before I even walked into her office: I had to give up my nursing job. That’s exactly what she advised, and I was heartbroken. As a licensed practical nurse (LPN), my employment options were limited. The goal was to finish school and become a registered nurse (RN), which would allow me to do other types of nursing that would not cause me to have bleeding problems.
Despite falling into a deep, dark hole of depression due to the sudden implosion of my existence and plans, I somehow managed to finish the online college classes I was taking and ended up with three As and two Bs. I was inducted into the Phi Theta Kappa International Honor Society and made the vice president’s list at my college.
I took the summer off and decided to continue pursuing my classes and finish my degree, all with the hope that I’d realize my goal of becoming an RN. All through this, I kept hearing my mom’s voice telling me not to let this get in the way. As I’ve gotten older, I’ve become more and more like my mom—something I’m very proud of. I took classes last fall and ended up with good grades.
Despite prophylaxis and not working anymore, I continue to struggle with breakthrough bleeds. This can be challenging, but I only allow these episodes to be detours, not derailments. It would have easy to roll over and allow this situation to throw me over the edge into a deep, lingering depression, but I refused to allow it to do so. This doesn’t mean I don’t still get down and disappointed; I just find ways to manage those feelings.
I recently relocated to western New York state and am switching my care to a hematologist near my new home. He has an aggressive plan to address my breakthrough bleeds, and I’m hoping to go back to work soon. I have a nursing program lined up and plan to return to school this fall to finish my goal of becoming an RN.
In short, hemophilia has caused detours in my life, but I haven’t let it derail me. Things may not always turn out as we planned, but I believe that with conviction and hope, we can still achieve our goals. Hemophilia may hold the map, but I’m behind the wheel!