A Tale of Struggle: How One Patient Advocated for an Implanted Port

Originally published on Hemophilia News Today by BioNews, Inc.

Kendall Fitzpatrick and I have much in common. Like me, she has hemophilia B and von Willebrand disease. She’s a registered nurse, works for a specialty pharmacy, and is an outspoken advocate for women with bleeding disorders. She lives in New Kent, Virginia, and is mother to a son who also has hemophilia B.

Kendall, an infusion nurse, sticks herself with a needle twice weekly and infuses medications through a vein for her treatment. But she has small veins, making it hard for her to infuse her medication. She recently decided she wanted a port implanted to make her infusions easier. A port is a device implanted under the skin, making it easier to access a vein.

Her struggle to obtain a port and prophylaxis (or “prophy”) has not been easy. She has changed her hemophilia treatment center (HTC) multiple times to receive proper care. I recently chatted with Kendall over Facebook Messenger, and the following is an excerpt from our conversation.

JL: Explain your frustration and why you want a port.

KF: I have been so discouraged lately, feeling like I was fighting for my health and not being heard. I have literally turned into someone I didn’t know due to feeling anxious, sad, angry, and a barrage of other emotions.

I know factor heals my body. I know my pain disappears when I am treated. As I followed the “prophy” [regimen] set by my hematologist, I repeatedly stuck myself 5–6 times [to infuse my medication]. We had a home nurse come to help, and she, too, had a difficult time. Many times I’d be stuck [with a needle] but not receive factor.

I had a few emergencies in recent months. One was a finger bleed, and all my rings had to be cut off. I had to utilize the ER because I could not stick myself once again. Over the months, my anxiety built with each stick, and I have not been following the “prophy” orders. I knew I needed an easier way to infuse my medication. I had resorted to sticking my ankles but knew this should be easier.

What happened when you asked your hematologist for a port?

They discouraged it and told me a port is not the standard of care for adults with hemophilia. They also mentioned the possible complications [and] suggested a PICC line, which has way more potential for infection.

So I decided to return to my first local HTC to present my case. I was armed with a history of problems with healing from an ankle sprain and proof that factor worked, but I needed a port. They also were not inclined to offer a port. What was possibly left that I’d have to do to be an active part of my plan of care? This has been mind-boggling.

I was ready to find yet another provider to help me. I just happened to meet someone within the center who heard my story. She happened to have been a cancer survivor and understood ports are needed for easier access. She directed me to another person who took my concerns and went to my HTC to discuss it further on my behalf.

Due to that moment of serendipity, the plan of care was changed. The local hematologist contacted me after hearing my concerns. After a long discussion, one where I held nothing back, one where I’m mostly sure I was being fired from care because of my big mouth, we came to the conclusion it was in my best interest to get the port I asked for and continue “prophy.” This is amazing, and I’m happy to have been heard!

Kendall’s experience reinforces the need for women with hemophilia to practice self-advocacy. Thank you, Kendall!