Knowing When to Move On

We’ve all had them: those amazing flings that morph into less-than-ideal relationships.

During the initial honeymoon phase, the person we are with appears to do nothing wrong. At that moment, we are certain that this time is different. We believe that all the hurt in the past will melt away as we get to know the new person in our life.

But as time passes, our infatuation disappoints. Perhaps they weren’t as great as our fantasy. Lust gives way to daily life, and issues emerge. We try hard to fight and to persevere. Yet, we get nowhere. Maybe we even slip backward. At some point, it may be time to cut our losses and move on.

This was me — and my journey with my first factor VIII product.

Journey to treatment

As I have shared in previous writings, I had quite a journey to obtaining a proper diagnosis as a woman with hemophilia. I am not alone. Many of my “blood sisters” have similar stories. Years often disappear as women desperately fight to be taken seriously, to be heard, and to gain access to appropriate medical care for their bleeding symptoms.

In spring of 2016, I was thrilled when I finally was “allowed” to have a few doses of FVIII in my home “in case of emergency.” I was taught how to self-infuse. People with hemophilia who need factor replacement products learn how to self-infuse or administer their own medication as needed, directly into their veins. FVIII must be given intravenously, a skill that takes time to master.

Wounds took forever to heal. I had a sprained ankle that had me in a walking boot for nine months. Cuts would ooze for weeks before drying out and healing. I had hematomas that took months to resolve. I thought this was normal. It was a relief when I learned it was not.

Was the honeymoon over?

When I first infused FVIII for an injury, it felt amazing. I saw a difference in my healing speed, and I wondered if this was what I had missed out on my entire life. I was so happy! Over time, however, I was concerned the factor was not working as it needed to. Since it was better than nothing, I questioned my ability to know if something wasn’t right.

I had a knee bleed that wouldn’t heal. Taking factor did not provide the relief I needed. My care team told me that if the factor did not work, I probably wasn’t bleeding. Yet, I was sure I was bleeding!

I asked my doctor if I could get a pharmacokinetic (PK) study to test my half-life — which is the time it takes for the activity of infused factor to drop by 50% — and make sure the factor was working. I was denied and told it was a waste of expensive factor to do a PK study on a woman who wasn’t on prophylaxis.

(Photo by Shellye Horowitz)

PK study for answers

Two years later, I had a new doctor, but still struggled to understand why I was bleeding despite being on prophylaxis. My new doctor was supportive of a PK study. The results confirmed what I had suspected for years. My half-life, which was supposed to be 12 hours, was actually 4.6 hours. My body cleared factor so fast it didn’t have time to work. This is why I thought it was working, then questioned it. I didn’t have the benefit of sustained healing.

It was clear that although access to a FVIII product was an improvement in my care and a relief, I needed to work with my doctor to find something that worked better. I explored my options, and we decided I would do a PK test with an extended half-life FVIII product. 

I was excited to test the product. Thirty-six hours after infusion, I cut my finger. It initially oozed a lot, but barely continued. I was fairly certain that protective factor was still in me, even 36 hours after infusion. I later learned that factor indeed was protecting me. My half-life had increased to over 13 hours on the new product! 

I went from being told that performing a PK test was a waste of expensive factor to understanding how my body reacts to and clears the products I use. Finding the right product meant more time at optimal factor levels for healing and safety. 

Moving on

I am thankful that my doctor agreed it was time to move on. I am hopeful the new product with a longer half-life will provide more protection and afford me the opportunity to continue to live the active life I want. Leaving the familiar behind can be hard and scary, even when doing so is in our best interest. For me, it has given me renewed hope and, God willing, stronger wings to soar into an even more active life.

***

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.