A visit to an unfamiliar hospital reminds patient of the importance of self-advocacy


Self-advocacy is the quintessential and necessary skill for people with hemophilia. It’s something I’ve been taught my entire life, and it’s something on which Hemophilia Federation of America frequently focuses its education. It’s incredibly important, and I’ve heard story after story reaffirming its importance. Whether it’s living through Emergency Room horror stories, advocating for the right medication, or enduring difficult hospital stays, every hemophilia patient has heard about or experienced a need for self-advocacy.

I have severe hemophilia B with an inhibitor and anaphylactic allergy to factor IX products, which is a fairly complicated diagnosis. I also have a healthcare team that I’ve been with most of my life, who understands me very well. A couple years ago I moved two hours away from my Hemophilia Treatment Center, which wasn’t a problem for me until recently. Although I have severe hemophilia, treat on-demand, and bleed fairly frequently, I’ve been able to manage my hemophilia entirely on my own for many years. I still attend my annual HTC clinic visits, infuse at home, and am able to manage my bleed pain. Unfortunately, 2020 began with a bleed that landed me in the hospital for the first time in more than a decade.

I had a terrible knee bleed that I could not control on my own. The pain was too severe, I wasn’t able to do my infusions because of it, and I knew I needed help. I also knew I wasn’t going to be able to make the two-hour drive to get to my HTC and its affiliated hospital, so, I went to the closest hospital with an HTC, hoping the doctors there would be able to adequately understand my diagnosis and treat me accordingly. I quickly learned otherwise — this experience was going to be a harsh reminder that I always need to be able to advocate for myself.

I was so used to treating myself or being around doctors who knew me very well, that I had forgotten what it was like for a doctor not to trust my instincts about my hemophilia treatment. As soon as I got there, the doctors did not understand why I was treating with factor VII and not another bypassing agent. When I asked what bypassing agent they had in mind, they mentioned products that had activated factor IX in them. When I once again explained my allergy, they ignored me and began testing my inhibitor levels to see if they could begin tolerization or treating me with one of the bypassing agents I had already told them I couldn’t use.

When you’re in the hospital with a bleeding disorder, it’s not uncommon to receive regular blood draws for testing. It wasn’t until late into the first night of my stay, when I was getting one of the blood draws, that I finally asked what that particular blood draw was for. When the nurse told me they were checking my inhibitor levels to see if they could change my treatment, I was dumbfounded. I asked to speak to the hematologist about it the next morning and tried to get some sleep.

The next morning, I was informed my admitting hematologist was not the one I would see, and in fact, I most likely would have a different hematologist every day, since they were very busy and had to rotate frequently. I also wasn’t guaranteed to see a hematologist from the HTC and would probably be seen by hematologists who did not regularly treat hemophilia patients. Consequently, the coming days consisted of explaining my situation to the new hematologist every morning, until I was finally able to get the message across on the fourth day. My fifth hematologist was one from the HTC. She listened to and trusted me, and she promised to make a note for any other doctor who would see me.

Thankfully, I didn’t have to argue with anyone else about my treatment, and I only spent a couple of more days in the hospital before I was discharged. I’m happy I found a hematologist who would listen to me, but I couldn’t help but think of what could’ve happened had I not known myself as well as I do or didn’t have the confidence to firmly tell a doctor what I needed for successful treatment. Had I let them try a different bypassing agent, I could’ve had an unnecessary, life-threatening reaction. Had I let them continue to test my inhibitor levels, which are not very high because I haven’t used factor IX since I was a kid due to my allergy, they might have thought it was safe to try to tolerize.

It’s important to trust doctors. They studied for years to gain an understanding of the human body and the medicine used to treat its ailments, and patients should never take that knowledge for granted. But every hemophiliac is different. An understanding of the human body does not automatically give someone an understanding of your body. Many hematologists understand this, and different treatment can sometimes improve your quality of life. However, in the event that you find yourself in a situation like mine, it’s incredibly important to remember that you are often the best person in the room to explain the way your body works and what it needs. Make sure you know what’s best for you, and never be scared to fight for it!

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