Having a treatment plan in place is one small thing I can do to stay as prepared as possible while living with HAE. I have worked with my specialist to develop my plan and try to create alternatives for different scenarios.
For example, my HAE specialist always brings up dental work as a known trigger for acute HAE attacks, in particular, at the mouth. So, together, we developed a plan to use when I needed dental work done.
Recently, I had a chance to use this plan when I had a tooth pulled. The plan we had in place included FIRAZYR® (icatibant injection), a medicine used to treat acute attacks of HAE in adults 18 years of age and older.
- I made sure FIRAZYR was on hand in case an acute HAE attack happened during the procedure or afterwards.
- We wanted to be prepared in case an HAE attack happened. My healthcare team and I are aware that laryngeal attacks can become life threatening. If I have an attack that involves my throat, we are prepared to use FIRAZYR as directed, and then I go to the nearest hospital emergency room right away.
- Informing Others
- I made sure the dentist and his staff were aware of my HAE diagnosis and of the symptoms of an HAE attack. I gave them the contact information for my HAE specialist and explained the plan we had come up with in case I had an acute HAE attack during the procedure. Thankfully, they didn’t need to contact him.
- Self-Awareness and Continued Monitoring
- My doctor prepared me for the possibility of an HAE attack after the procedure and told me to monitor myself for symptoms of an HAE attack after the procedure.
- When I got home, I started to notice the symptoms of an acute HAE attack in my cheek.
- My doctor had prepared me for the possibility of an HAE attack after the procedure, so I injected FIRAZYR into my abdomen slowly over 30 seconds. And, after a couple of hours, I could tell that my pain and swelling were being relieved.
- My doctor told me that the most common side effect is injection-site reactions, which for me often include a burning sensation and bruising at the injection site. He reminded me that everyone responds differently to treatment.
Having a plan in place helped me not get so anxious before having my tooth pulled. For me, sometimes being anxious and nervous seem to cause an HAE attack! But having the confidence that comes with having a plan really helps me.
While having a plan in place certainly does not stop HAE attacks, it can help make them more manageable when they do happen. That’s why I made sure to talk to my employer about my HAE. You can read about that in my previous blog post, Talking With Your Employer.
Having a plan in place helps me stay more calm when an HAE attack happens, especially when I’m in the ER trying to explain what’s going on to the doctors. I have all of my paperwork in place, and I’ve prepared those around me for a possible attack. Having a plan gives me a sense of reassurance when HAE attacks can be so unpredictable.
Talking with my doctor and coming up with an overall plan has been a key part to managing my life with HAE.