HAE Day

Today was World HAE Day!

Hereditary Angioedema (HAE) is a disease that causes severe swelling episodes. The most common areas of swelling include limbs, face, intestinal tract, and airway. These swelling episodes can be triggered by any minor trauma, or by absolutely nothing at all.

So what does that mean?

Any bump, hit, injury, bruise, or break can cause swelling.
Any emotion that increases adrenaline: sadness, anger, excitement, elation, frustration, nervousness, or fright can cause swelling.
Swelling can also be induced from NOTHING AT ALL.

If you swell in your airway, it can cause an obstruction, mimicking anaphylaxis, but not resolvable with epinephrine. In fact, using an EpiPen during a throat swell could actually make things worse.

You can swell anywhere.
I mean - anywhere.

Anywhere on the skin, head to toe, and anywhere on the inside! Intestines are a common spot, bladder, pancreas, esophagus, trachea, vocal cords, muscles, kidneys, tongue, reproductive system.
Anywhere.

To celebrate HAE day, my body wanted to remind me what an intestinal swell felt like. How kind of it.
I suffered a partial blockage on Sunday evening, which primarily affects my Crohn's Disease. After the blockage was resolved, however, the pain and nausea only increased. That partial blockage is a type of trauma. So my body decided that it was time for an intestinal swell (the first major one since I was put on prophylactic blood products twice a week).
How timely of it to happen the weekend before HAE Day!

An intestinal swell is impossible to see on the outside. You cannot see the unbearable cramping, the pain, the level of nausea, the desperation to vomit, the near loss of consciousness solely from pain.
Swelling that is putting pressure on other internal organs, closing up the space in the intestine itself - limiting the area where food can pass through.
With swelling and already established inflammation, this means I could feel everything moving through my intestines. It burned like hot coals scraping through.

After 6 hours of pure agony, I knew for certain that it WAS an intestinal swell.
That is the other issue with internal swelling - especially when you have multiple illnesses. It could be indigestion. It could just be my Crohn's. It could be food poisoning. It could be the flu that is going around. It could be that I ate something, unwittingly, that I am allergic to. It could be a million different things... so I usually wait until I have violently vomited in three separate sessions before assuming it is a swelling episode.

So we call an ambulance and get me to the hospital, where I am treated for an HAE swell, for dehydration, and for one of two viral infections that have been going around *just in case*.
The issue was taken care of, but that does not mean that I suddenly feel like a million bucks!

Swelling episodes take a lot out of you. The amount of energy that the body expends to vomit, alone, is staggering. My body is fighting several of my own organs daily, trying to fix my back while simultaneously breaking it down, causing inflammation in various sections of my body, and then fighting with a missing link (the missing protein in my blood: C1 Esterase Inhibitor)! So my body swells up. Now it has to work 5x as hard to digest food, to vomit, to move, to stay awake, all the while fighting me every single step of the way.
I pulled some intercostal muscles (in between the ribs) from vomiting.
My eyes are bloodshot.
My esophagus and throat are raw from the acid and the force of vomiting.
My stomach is sore. (I sure got an ab workout though!)
My back is sore.
My legs, my arms, my eyes are sore.
My head is pounding.
My mind is fried.
My energy is so much lower.

This happened on Sunday and only TODAY (Thursday) am I finally seeing the depth of after-effects.
My intestines are bleeding.
My intestines took such a beating from this episode - they are so torn up and raw from everything that happened - that they will be bleeding for days.
I have medications to help with this, of course, but this is the level of trauma that one swelling episode can cause.

From a mushroom that kinda got stuck while being digested.

A MUSHROOM.

Hereditary Angioedema is so much more than just external swelling. It is true that many of the episodes affecting the extremities are not painful. Some people with HAE never experience painful swelling.
Unfortunately, swelling of the internal organs is not only painful, but can be extremely dangerous. It can even be fatal.