My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment Center
Last updated: March 2023
I used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from a nosebleed or some type of playground incident. Those visits usually peeled me away from something fun and reminded me how different I was from my friends.
As I got older, my relationship and trust in my healthcare team grew. I viewed my favorite doctors and nurses as adult friends – akin to aunts and uncles – who would patch me up. Before I knew it, I was back to the kid shenanigans with my buddies. And since I have moderate hemophilia, the kind of goofball accidents that landed me in my ENT's office became rarer and rarer as I entered my teens.
My growing hemophilia problem
My first hematologist was an hour and a half away. He actually had to become an HIV specialist because most of his patients – like me – had been exposed to HIV via the contaminated blood products used to treat hemophilia in the 1980s. I hated those long drives with my mom so much. Hemophilia itself had become less of an issue for me, overshadowed by the latest addition to my medical resume.
In my early 30s, I was so on top of my medical needs where HIV was concerned. My medications were working brilliantly, and my viral load was (and remains!) undetectable. But with hemophilia? Not so much. That became a problem when my left ankle joint started to show some early signs of wear and tear. I also started to have pesky little bleeds, some of which I ignored entirely rather than treat.
What made me realize I needed to take hemophilia more seriously
Bad habits where hemophilia was concerned were forming and, just like when I was a kid, I'd only see my new hematologist when a bleeding episode happened. The one that made me realize that I needed to take hemophilia more seriously than I ever had before was when I slid into a booth at a restaurant and hit my side on a ridiculously placed steel beam.
The bruising on my love handle grew from the size of an apple to the size of a grapefruit before reaching watermelon proportions. Finally, I went to my hematologist, who gasped when I raised my shirt up to show off the damage. For the next week and a half, I returned to the hemophilia treatment center to receive clotting factor, which is given intravenously.
After that, I decided it was past time to learn how to stick myself at home. Which meant I could treat a bleed and head it off before it even got to the size of a grape.
What it's like to visit a hemophilia treatment center
Recently, I had my yearly hematology appointment. I'm so lucky to have a hemophilia treatment center in town that seems to have grown alongside my own self-improvement where my bleeding disorder is concerned.
In the last few years, my appointments have included discussions with a social worker and a physical therapist. At each appointment, the entire team makes sure that I'm on track: literally from head to trick ankle.
Here's a rundown of how my appointments go.
Labs and recent medical history
First, I arrive 30 minutes early at the University of Virginia's Hematology and Oncology Center. I get labs drawn so that during my appointment, my hematologist has all the information that my plasma can provide. Then I chat with an RN about any recent bleeds, aches, or pains.
After that, the physical therapist comes in. Even though I see him once a year, he comes in ready to see how my left ankle is doing. I take my shoes off and take a walk down the hall as he observes. When we go back into the examining room, he gives me some tips on how to strengthen the weaker aspects of my ankle game.
He always gives me little stretchy TheraBands to exercise the joint, which I may or may not use with regularity... there's always room to improve on my end of things. To help me remember, I'm keeping those bands by my gaming chair, so I can strengthen my ankle in between online games with my friends.
After the ankle exercises, a social worker checks in. I get asked about my mental health and general state of being, such as how things are going at home, etc. Hemophilia can be a very expensive condition for those who fall through the cracks and fortunately, the University of Virginia has a lot of programs that help. Having someone there to check in with patients where that aspect of health care is concerned is such a relief.
Then my hematologist reviews some of the bleeds I've treated at home over the previous year. Usually, it's me bumping into something every few months or so, resulting in a minor incident that is easily taken care of by myself. Whenever I treat at home, I send her a message to let her know about what happened.
Then I totally forget about it. I laughed when she reminded me about what my last treatment back in November was a result of – smacking my side with my brother's Christmas present, a 25-beer Costco advent calendar while trying not to spill my iced mocha all over myself.
Good care is a two-way street
I'm thankful to have access to such wonderful care, and I'm proud of myself for doing my part to make things go a lot smoother than was the case several years ago.
How do you feel about your support system?