Sometimes I’ll long for the days when my loved one is only suffering from a cold or allergies; it’s not that I wish him ill, it’s just that if he must experience some type of medical issue, then I would prefer it to be something less serious, with a more predictable course.
Thankfully, I’ve been able to develop a plan over the years to help me handle my loved one’s acute HAE attacks. It may not be perfect, and of course, everyone is different, but this is what I’ve found helpful for us.
Once my husband recognizes the symptoms of an acute HAE attack, we go into action.
- I gather the supplies for him
- the alcohol wipe
- Syringe of FIRAZYR® (icatibant injection)—which is FDA-approved for the treatment of acute HAE attacks in adults 18 years of age and older
- and a band aid
- I keep him company while he injects the medication
- Self-injecting should only be done after being trained by a healthcare professional. Injections should be done slowly, over at least 30 seconds, following the step-by-step instructions that come with each package. There are side effects to be aware of with FIRAZYR, including injection-site reactions, so talk to your doctor to see if it’s right for you or your loved one
- Acute HAE attacks can be stressful for my husband, and he says that having me talk to him helps him relax
- I dispose of the needle in the sharps container
- One of us will add the attack onto our calendar
- Together, we’ll talk about the attack and try to determine what may have caused it (for my husband, triggers can be as inconsistent and unpredictable as the attacks themselves)
- Then, we’ll decide the best way to communicate the details of the attack with his physician
- (That means we either get in touch with his physician right away, or we write things down so we don’t forget them at his next appointment)
If, for whatever reason, an acute attack puts my husband in severe discomfort, then there are a lot of things I don’t do:
- I don’t ask anything of him when he’s in pain (nothing good comes of that)
- I don’t say that I know what he’s feeling, because I have never experienced the physical pain of HAE (though I have experienced emotional pain watching over my loved one)
- I try very hard not to let my loved one see how the attack is affecting me (he already feels bad physically, so he doesn’t need to feel worried that he’s inconvenienced or upset me)
- In those times that I’m worried or upset, I reach out to my friends who are also caring for someone with HAE. They are my “safe place” to share my frustrations and vent
How do you feel during an acute HAE attack? Do you or your loved ones have a plan in place? What are some of the things you do or don’t do? Share your comments and perhaps help others through their HAE journey.