Hemophilia Makes the Severity of My Injuries Unpredictable

Originally published on Hemophilia News Today by BioNews, Inc.

Even a minor injury can lead to bleeding for columnist Jennifer Lynne

I’ve learned to expect the unexpected when dealing with my bleeding disorders. A few days ago, I took a bike ride with my twin nephews who were visiting from Wisconsin. My small city of Punta Gorda, Florida, has a great bike loaner program. Bicycles, tricycles, and handcycles are available at locations throughout the city and are free to check out for the day.

We climbed on our bikes and headed along the waterfront. When we stopped for lunch, my hand somehow hit a railing as we locked our bikes. Ouch. It was nothing outlandish, but I have hemophilia B and von Willebrand disease, which randomly complicate minor injuries like this.

As we ate lunch, I started to feel more pain. I looked down to assess the situation and saw my hand swelling like a blowfish. I discretely pressed my hand against my water glass to take advantage of the cold. The pain and swelling were greatly out of proportion to what had happened. I recognized I was experiencing a bleed from this minor injury.

At home, I applied the RICE method, which stands for rest, ice, compression, and elevation. They’re basic concepts, but I have found that ice and compression work miracles for swelling and pain. I also took the anti-inflammatory medication meloxicam, prescribed by my hematologist for situations like this.

My nephews questioned what was happening as I sat there with ice on my hand. I had kept my injury quiet. One looked at my hand and was perplexed by how it could be so swollen from an injury he didn’t even know had happened. My mom suggested I go to the emergency room.

My mind races

My mind started to race in lots of directions. Why was my hand so swollen? Did I break it? When I infuse, I use my left hand to poke the needle into a vein in my right hand. My right hand was now very swollen. How on earth would I infuse my medications into a swollen hand? I’ve toyed with the idea of infusing my medication into my foot. Would this be the day I’d actually need to try it?

I took some pictures to document what was happening. I’ve found photos are the best way to document a bleed and help determine if an injury is improving or worsening.

I uploaded the photos to the MicroHealth app, which is used by the team at my hematology treatment center. The app is beneficial because it sends my team a notification and offers me a convenient way to record my bleeds. Documentation could be necessary for insurance purposes because my medication is costly. Just one dose of both medications costs over $7,000. Often several doses are required to treat a bleed.

The decision

Infusing and sticking a needle into my vein is a big deal and always my last resort. I hate to do it. I decided to implement RICE for a few hours and monitor my injury. Luckily for me, although the swelling was extreme, it didn’t get worse. I chose not to infuse. If I were younger, I definitely would have infused myself, probably using my foot. It’s not worth the risk of permanently damaging a joint.

The randomness of the severity of bleeding episodes with mild disorders makes treatment decisions difficult. I treat bleeds on an as-needed basis. Some people infuse their medication regularly to avoid situations like this. My team has confidence in my decision to initiate treatment when I believe it’s necessary — something I’m grateful for, as injuries often happen on the weekends or while traveling.

My hand injury was unexpected. Thank goodness I knew to expect it.