My infusions have been logged since I was four-years-old, and the medium with which my family and I have logged them has changed drastically over the course of my life.
Logging your treatment, or rather, writing down your infusions and what kind of bleeds you’re treating, is the easiest, most efficient way to communicate your bleed history and keep your Hemophilia Treatment Center up-to-date on your health. It’s an essential part of maintaining a healthy life as a hemophiliac, and it should be a part of everyone’s treatment regimen. As a young hemophilia patient who’s living away from my parents for the first time, it’s nice to have my independence, and being able to treat myself is something very important to me. However, it’s absolutely necessary that a patient maintain a dialogue with their HTC. When your HTC knows how frequently you’re treating, where your target joints are, and can notice any kind of change in the way you’re bleeding, they’re able to make sure you’re getting the proper care.
My infusions have been logged since I was four-years-old, and the medium with which my family and I have logged them has changed drastically over the course of my life. I currently use a wonderful service called MicroHealth, and it’s changed the way I log my infusions so much that I wanted to write this blog about my history with infusion logs, in the hopes that some patients will find it informative, and maybe even reminisce with me about the days when logging infusions was just a boring, uninteresting task on our checklist.
In 1996, my mother started logging my infusions to send to my Hemophilia Treatment Center. Back then, of course, there were no innovative or creative services to go about doing this. She bought a notebook, and logged them by hand for the next several years. Eventually, she began doing them in Microsoft Word, and that’s where I took over, logging them myself. It was nothing fancy, but it certainly did the job, and I know a lot of patients who still use Microsoft Word, or a similar program, to log their infusions. I did this year after year, until I got to college. I’ve always been interested in technology, and since my generation is filled with individuals who will proudly proclaim, “There’s an app for that,” I decided to do some research to see if I could find an app or service that would help me bring my infusion log into the 21st century. Sure enough, there are plenty of people making amazing services that will do just that. HF Healthcare has a great resource to help you select one that’s right for you, and for me, that’s MicroHealth.
While I don’t want this to be a boring plug for MicroHealth, I do want to take some time to explain everything they’ve been able to do for me, and how I think they can help every hemophilia patient. I want to be clear that MicroHealth has not asked me, or HF Healthcare, to write anything for them. I’m simply doing this because I love what they do. The service is easy, it’s free to use, and you can get started quickly. You start by inputting all of the information regarding your hemophilia. They ask which type you have, whether or not you have an inhibitor, and what factor you use to treat. After that, you answer more questions about your treatment. You tell them how frequently you treat when you have an active bleed, and if you treat prophylactically, what your schedule is like for that treatment. Once they have that information, they allow you to set up reminders. If you have a prophy treatment you do every morning, you simply tell them what time you usually do that. This then sets up an optional text reminder. They’ll send you a text message simply asking, “Did you treat this morning?” and you can answer yes or no. This can be changed for any kind of schedule, and it works wonderfully. As I’ve said before in previous blog posts, I don’t treat prophylactically, but they still have text reminders for me when I have an active bleed. I’ll text them and tell them I’m beginning treatment on a new bleed. I’ll say that I infused once for a bleed in my right knee, for example, and they’ll log it for me. Then, because I’ve told them that I treat every four hours when I have a bleed, they’ll text me again four hours later to ask if I’ve treated. If I have, I simply respond, “Yes,” if I haven’t yet, I don’t have to text back right away, and if the bleed has stopped, I simply write, “Stop.” It’s as easy as that. But that’s not even the best part of the service.
The convenience of being able to log infusions via text message is wonderful, but it’s what they do for you with that information that really makes them spectacular. Let’s say that I have an annual meeting with my HTC coming up in a week. Well, I can go onto MicroHeatlh’s website, and check out my infusion log. They instantly create an easily printable PDF that includes a calendar of the year, showing which days I infused, and then give a detailed list of which joint I infused for, and for how long. Here are some screenshots of my calendar to give you an idea of what that looks like:
As you can see, it’s a very detailed summary of the recorded bleeds, and they lay everything out so beautifully, any doctor would appreciate this kind of presentation. The service also allows you to grant access to your doctors, so they can view these things without even having to see you, making it even more convenient for them.
The truth is, though, it doesn’t matter how you log your infusions, as long as you do. It’s important for your doctor to know how they should be treating you. Because hemophilia is a lifelong condition, it’s important for medical professionals to monitor how it changes over the course of your life, and logging is the easiest way for them to do that. There are many services out there that can make it easy for you, and I encourage every patient to try them out. Life can get hectic and forgetting to log an infusion is understandable, but having someone text you, reminding you to log, takes the pressure off completely. It’s one less thing you have to worry about when it comes to your hemophilia. We’ve come so far with our treatment; it’s time to take our logging of our treatment into the 21st century, too!
What tools or resources do you use to log your infusions and/or bleeds? Let us know in the comments below!