Motivating Myself to Stick to My ‘Prophy’ Routine
Needle. Vein. My eyes shift back and forth. Needle. Vein. Which vein is large enough to hit without blowing, but small enough to anchor well? Tourniquet, needle, vein, syringe. I hate infusing. I HATE this. Well, tonight I definitely hate this.
Maybe I haven’t eaten enough, or perhaps it’s due to sleep loss over the past few weeks. I don’t have it in me, yet I am already two days late. I have to get this needle in my vein tonight. It is imperative that I push through and infuse, for my health and safety.
What is ‘prophy’?
I infuse factor VIII, a protein my blood is missing, every 72 hours. This helps to prevent bleeding episodes. Skipping doses means heightened susceptibility to bleeds. Knees, knuckles, shoulders, and ankles are often the joints I have issues with.
When people with bleeding disorders infuse clotting factors to prevent bleeds, it is called “prophylaxis,” or “prophy” for short. If people with bleeding disorders only treat when they have an active bleed, it is called “on-demand.” If someone is struggling with repeated bleeding episodes, staff at their hemophilia treatment center may suggest prophy.
I once knew a woman who was told she “wanted to be like the boys” when she fought for prophy to prevent bleeding. While she did indeed want to have access to the same treatment a man with the same factor levels would have, she did not enjoy the actual process of infusing factor. Most of us do not enjoy it.
I love that I have access to factor replacement to protect me. After a few years of working through the right product and dose, I have reduced my bleeds from every 3-6 weeks to no bleeds in about six months. This was a huge game changer for me and increased my quality of life.
Yet, I do struggle to keep up. There are days when I just don’t want to infuse. Some days I let it go, telling myself that I can have a break and infuse tomorrow. Most days, I push through and find a way so I am protected.
Why is it a struggle?
There are so many reasons people do not infuse or skip doses, including:
- Fatigue — my number one excuse.
- Memory issues — yep, they just forget.
- Embarrassment — stepping away from a group of friends or infusing in front of one can be challenging.
- Not enough time — when I am late I hate to infuse, as the stress of rushing can make me blow veins.
- Fear of needles — you would think hemophilia would cure people of needle phobias, but it doesn’t always; fear of needles can definitely impact treatment adherence.
- Lack of access — perhaps insurance is an issue.
For some, access to new treatments such as Hemlibra (emicizumab) and gene therapy has improved adherence. Hemlibra is a subcutaneous injection that may be timed as monthly, weekly, or biweekly. The time it takes to infuse is shorter, and subcutaneous administration means no more hunting for those veins! This has been a gift to our community.
Gene therapy is also an emerging treatment, which is further along for hemophilia B than A. This is seen as a “cure,” and the goal is to get the body to produce clotting factor on its own.
How I persevere
Persevering is not always easy. When I can barely keep my eyes open, infusion is overwhelming. Yet, I remind myself how fortunate I am. I have an accurate diagnosis and access to medication. I have a treatment team whose members are supportive and work to keep me healthy. Following the treatment plan reduces bleeding episodes and greatly improves my quality of life. Infusing is a win.
Giving myself the space to struggle with the act of infusion is important. It is OK to acknowledge those moments when I feel I have hit a wall. It is also OK to hate poking myself with a needle multiple times a week.
Gratitude for the ability to infuse can also help me climb out of those spaces of resistance. I am fortunate. People around the world struggle to obtain a diagnosis and factor products. I have both. I am lucky to be able to use them, even if it means poking a needle in my vein every three days. It is a win.
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.