Sometimes we all reach crossroads in our lives where we face decisions we didn’t think we’d have to face, or deal with situations we didn’t expect. The year 2010 was like that for me.
I’ve always been a very methodical person—a planner. My mantra in life has been “one minute of planning saves 12 minutes of doing.” In 2005, I decided to leave a career of nearly 20 years in the corporate world, having been successful, but very unfulfilled. My mom passed away, and my dad was very ill.
The fates stepped in, and I suddenly found myself laid off from a fairly new job. My dad needed assistance, so I moved home to Virginia to help him out. After six months of taking care of him, I had an epiphany: My true calling in life was to be a nurse. So, I went back to school and became a licensed practical nurse and began working at a local hospital full-time.
The goal with my nursing career had always been to become a registered nurse (RN). To complete the necessary education to become an RN, I would have to work and go to school full-time. I loved my job at the hospital and my work with patients and their families on a medical-surgical/oncology unit.
Hemophilia Reality Check
Floor nursing (acute care for patients admitted to the hospital) is physically and emotionally demanding work. Shortly after beginning my new job, I noticed I was experiencing more bleeds related to my severe hemophilia A. I’d finally learned to infuse myself at home about 10 years ago, so I would infuse on-demand and keep going. I started back to school, worked full-time and was still living with my dad and helping to look after him.
Oftentimes, we get so caught up in life that we can’t see what is right in front of us. I can tell you that most nurses are awesome caregivers to everyone but themselves. I guess I was one of those people. Don’t get me wrong, I took good care of myself overall: I ate healthy, lost 25 pounds, was going to the gym three or four days per week. But with regard to my hemophilia, I became so caught up in getting by that I’d failed to realize my bleeding episodes had been increasing: 10 one year, more than 20 the next year and, finally, 38 in 2009.
One day at work, a patient asked me what had happened to my arm. I replied, “What do you mean?” The patient pointed to my left arm, and when I looked down, I realized I must have looked like a drug addict due to all the needle marks from my infusions. I explained to the patient about my hemophilia and having to do infusions at home to treat it.
My Hemophilia Epiphany
When I got home that night, I got out my transfusion log and began to put everything together. I realized my bleeding episodes were increasing and there was a pattern of target areas.
I made an appointment with my hematologist, whom I normally saw only once a year, to discuss this. I took all my logs with me, and when we sat and discussed my bleeds and their increasing frequency, it was apparent that I needed to change how I managed my hemophilia.
I’d never been on prophylaxis infusion therapy before; I’d always just infuse whenever I got a bleed and keep going. My hematologist felt the increase in bleeds was directly related to the physical demands of my job. She felt I needed to begin a prophylactic regimen of infusing factor three times a week to help decrease and eliminate these bleeding episodes. I agreed this was a necessary intervention.
The three years of battling these bleeds had taken a toll on my veins, so the hematologist asked me if I would be interested in getting a port implanted in my chest. This was something she’d discussed in the past, but I was hesitant to do, as it would be a visual reminder to me that I had a chronic condition. I knew the value of ports, having worked with many oncology patients. I’d also seen the dark side of ports in patients who’d gotten infections or had other problems.
Given all I’d been going through, I just wanted to get things under control and get on with life. I had the port placed in late February 2010. Getting a port has been like learning to walk all over again, but I’m glad I got it! Next time, I’ll talk more about my journey this past year with the port.