Not surprisingly, this week has built up and up to the point of needing to take a trip to the ER.
With the last couple weeks including bbq's, birthdays, engagement photos, Decker's surgery, and meeting with a Priest to start marriage courses, my body officially retaliated yesterday.
Of course, it all started with the rash and general body swelling, then I started having intestinal symptoms, followed by bladder symptoms, and then woke up yesterday with an incredibly hoarse voice and a change in vocal register. All together these are telltale signs of a major HAE episode.
So yesterday afternoon we headed in to the ER.
Everyone there was amazing. What was really neat and interesting about this particular visit is that everyone I dealt with had never seen a patient with HAE and all but two had never even heard of the disease (or at least had no recollection of learning about it in med school). So immediately they brought down a first year intern for a 'teaching opportunity'. So, although a relatively stressful overall experience for me, I always enjoy being able to show new health professionals what my experiences are with the disease as well as treatment. They asked specific questions and I explained what it all meant for me.
Of course, they photocopied all of my information and my treatment plan card, then had to research the illness and the treatment protocol before administering the necessary blood product, so the whole process took a bit longer than what I have previously experienced with imminent throat swells, but they were amazing. And really it was only just over 5 hours total, which is still really good.
Anyways - I got my two vials of Berinert, and within five minutes I could feel my chest open up and my breathing became much more open.
It is incredible that five minutes of a medication can create that noticeable of a difference... and then the next four days I will (likely) feel like a new person. My legs are less puffy, my arms have reduced, my bras fit better, and even my face has slimmed down (and I hadn't even noticed any facial swelling to begin with).
We have got a bit of driving to do today, so I will not retain this blissful time not being very puffy, but even my energy is better and I feel less nauseated.
I wish every disease had a medication that can almost entirely fix the problem - even if it is only for a few days. Everyone deserves a few days off of whatever their ailment might be.
❤