As someone with Factor 1 deficiency, my journey to fit into the bleeder community has been long and full of many twists and turns. At first glance my story may not match the “typical” bleeder experience, but a closer look will reveal many similarities.
Growing up around Cincinnati in the 1980s, I had access to excellent care. But up until just a few years ago, Factor 1 had no concentrate to treat with. My only product was cryoprecipitate, which necessitated visits to the ER and/or HTC for every bleed. So unlike many of my peers within the community who were enjoying the benefits of home care, I could only wish that day would come.
In spite of this, my quality of life was relatively high. I had fairly normal school attendance, most bleeds were minor and treated on demand, and I was allowed to do almost anything I wanted (within reason). But at the age of 18, I was hit with a curveball that proved to be more difficult than even my most complicated bleeds.
Like many of my generation, I was faced with the diagnosis of a deadly virus from contaminated blood product. While preparing to go to college, I was told that at some point my cryo treatments had given me hepatitis C. Neither my family nor I had any idea what to do - the moment was life-altering. We were offered what treatment there was for hep C, but the side effects were brutal; most significantly I experienced extreme fatigue, which interfered with my ability to successfully transition to college life. So I abandoned treatment after maybe a month. Like with my limited treatment options, all I could do was go on with life, trust God, and pray for a cure.
But I didn't let my hep C diagnosis slow me down – I got two college degrees and started a career I love, all with very few bleeding issues. Then, at the age of 35, the things on my “wish list” started to come true. On Nov 13, 2014, I received my first-ever infusion of fibrinogen concentrate. To this day, it has been successful. Access has been a challenge at times, but always worth it.
Once I started on factor, the next item on my wish list was home infusion. This was a long fight that took a lot of research, but “Independence Day” came on September 21, 2016 thanks to a great team of pharmacy staff and home nurses. But unfortunately, after nine months of home care, my stubborn veins decided they weren't having it. The head of my HTC refused to allow ports for anyone for any reason, but I wasn't giving up my independence without a fight. Earlier that year, a younger MD had started in Cincinnati, and I wanted to see what he had to say before giving up. He heard my story, did some research, and didn't hesitate to order a port. On September 6, 2017, my port was installed. Finally, independence had come full circle.
In the middle of all these advances, my hematologist gave me the chance to treat (and potentially cure) my hepatitis C. By the grace of God, it hadn't been causing me any problems, but of course I was still eager to get rid of it. Treatment began on May 5, 2016 and after 12 weeks of dosing and 6 months of follow-ups, I was declared “cured” on January 24, 2017.
I made it through these challenges because I was able to reconnect with my wonderful blood brothers and sisters. My family and I had been involved with the community when I was young, but I took a step away in my 20s because I didn’t always feel like I belonged. But thanks to social media and several well-timed meetings, I got the encouragement to keep fighting for the solutions that were becoming available. Nothing about these past few years would have happened without God and my hemo family. From hearing stories of surviving challenges much worse than mine, to being cheered on by many walking the same path, I am proud to be part of such a resilient community. I’m still learning and growing daily, and I hope to attend HFA’s Symposium in 2018 - it would be my first national event. We are all in this together and I hope to meet more of you along the way!