My First Time at the ER with HAE

After I was officially diagnosed with hereditary angioedema (HAE), there was a bit of time that lapsed before I was able to get any medication because of insurance and just normal wait time. My doctor told me that if I even suspect I’m swelling, to go to the emergency room (ER) - which honestly at the time I thought was a little overkill, but turns out he was right in telling me that.

Not long after being diagnosed, I started having horrible stomach pain, and my stomach was very distended compared to what it normally was. I said to my husband, "I think my stomach might be swelling." But I wasn’t sure. I had never realized that I’ve probably been having abdominal swells my whole life and just had no idea. So, like my doctor told me, I took a trip to the ER and explained to them that I have hereditary angioedema and that I think my stomach is swelling.

Being turned away at the ER

I remember them looking at me like I had two heads. Then, the ER doctor came in to me and literally asked me, “How am I supposed to treat you?”

I remember feeling so small and honestly stupid at the time. I knew my disease was rare, but these professionals couldn't even be bothered to even Google my condition or take me seriously. I basically shut down after that - so there I was in the ER, in pain after already waiting for about six hours for them to not even take me seriously. They gave me a high-dose antihistamine and a pamphlet on “bloating” and sent me home.

The next day, I woke up in so much pain. I went into the bathroom and didn’t leave all day. I couldn’t function at all as a wife or a mom. I called my allergist and explained what was going on, and they told me to get to their emergency room, which was over an hour away. So my husband took me to the ER, and there I was, definitely taken more seriously but still faced trouble getting treatment.

Questioning my own body

I explained to them what was going on and they were convinced I just had a stomach bug. My stomach was so distended compared to what it normally was, but because they didn’t know me, they didn’t know that.

I remember the doctor asking me, “If you've never had an abdominal swell before, how do you know that this is one?” He also said to me, “We have the medication, but it's a lot of money and we don’t know if your insurance will cover it.”

To this day, because of this doctor, I second-guess every time if I'm experiencing a swell or not.

At that point I was over the doctors, and knew that I was already on day two of this and whether these doctors treated me or not, swells usually went away after three days. I didn’t end up getting treatment because this doctor made me question myself and then I went home because I was worried about getting stuck with a huge bill if my insurance didn’t cover it and I didn’t know 100% that I needed that medication.

Although now, looking back, I know without a doubt that I was experiencing a really horrible abdominal swell.

Advocating for myself

I will never let another doctor convince me that I don't know what's going on with my body.

I am so grateful that now I have medication at home and hardly ever have to go to the emergency room and convince doctors what's wrong with me. My advice to anyone who has to go to the ER for a swell would be to throw manners out the window and tell them exactly what you need. And if you don't feel comfortable with that, have them call your doctor so that they can advocate for you.