Keeping an open and constructive relationship with my healthcare team is something I’ve learned to do over time, and it’s now a high priority for me. If I’m not giving them the most accurate information possible, I’m really putting myself at a disadvantage and possibly preventing them from doing their jobs. So trying to downplay how many acute HAE attacks I have, or how severe they are, is not the right attitude to have.
To keep myself accurate about how active my HAE is, I use a journal to keep a record of all of my acute HAE attacks. I try to keep the journal as up-to-date as possible and write down the attack as soon as I have the time.
For each acute HAE attack, I record the:
- date and time I recognize symptoms
- location (ex. arm, abdomen, leg)
- severity on a scale that I have discussed with my doctor
- symptom relief—the time that I start feeling a relief in the symptoms of my attack
I also try to figure out if there was a possible trigger for each HAE attack. Sometimes, but not always, the trigger is a trip to the dentist or physical trauma, but other times I have no idea what may have caused my attack. In addition to my triggers, I also try to write down any noticeable changes leading up to an attack, like changes in my mood or my energy level.
Since there’s only so much time during an appointment, my doctor and I came up with a plan to get the most out of our time together. I try to send my journal to him a few days before each appointment for his review. This gives my healthcare provider time to review my description of the HAE attacks and also prepare topics to discuss at my appointment. Those topics include suggestions for managing attacks, trying to figure out any possible triggers, and how my treatment plan is working for me. I also prepare for my appointments by reviewing my journal and bringing any questions I have to my appointment. Then, during my appointment, I follow along in my journal as my specialist and I discuss my attacks. This allows us both to make the most out of the appointment. Talk to your own specialist about how best to prepare for your appointments.
If I’m not open and thorough with my healthcare team, they would not be able to understand what I have been dealing with or get the information that will help them treat my condition.
If you have HAE, you may want to talk with your doctor about treatment options. If you want to talk about FIRAZYR® (icatibant injection) (a medicine used to treat acute attacks of HAE in adults 18 years of age and older) with your doctor, click here to sign up for more information, including a page that you can download and take with you to your next doctor’s appointment. If you and your doctor decide that FIRAZYR might be the right treatment option for you, he or she can request a single dose of FIRAZYR as a sample for you to try.