A Health Update

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." -Psalm 73:26 

     Today was my allergy appointment. It was follow-up from my week long hospital stay last week. If you hadn't heard I was once again admitted into ICU last week. I was on a continuous epinephrine drip for three days before I was tapered off of the drip and moved out of the ICU. I stayed in the hospital for two more days before they let me go home. Even though I've been out of the hospital I'm still having daily anaphylactic reactions. Today's appointment was to come up with a game plan. Or at least work on coming up with a game plan. 

     The appointment was very productive. We have decided that because steroids are not helping my symptoms at all it is no longer necessary for me to be on them. Which means once I finish this prednisone taper in 10 days I will officially be steroid free! We also started the process to get approved for the Xolair shot! Xolair is an injection used to treat patients with chronic hives but it has also proven to be very successful in treating patients like me with idiopathic anaphylaxis. Once approved I will get a course of at least three injections spread over a couple of months. It won't make an immediate difference but the hope is that over the course I will begin to have less and less anaphylactic reactions. There are risks to this as with any treatments but we have decided that the possible benefits outweigh the risks. I will also be monitored for several hours after receiving the injections for any negative affects. 

     We are also covering all of our basis. I will be making an appointment with an ear, nose, and throat doctor to rule out any other possible causes for my anaphylactic reactions. We want to be sure that it is not an upper airway obstruction or lesions causing my difficulty breathing. Although unlikely we want to make sure everything is covered. My allergist will also be reaching out to an expert in Mast Cell Activation for further guidance in treatment options. Our hope is that the fresh eyes will bring new ideas to my treatment plan.

     I am still struggling everyday with reactions. I am losing safe foods more quickly than I ever have before and I'm having more severe reactions to environmental triggers than I used to. I have a feeling it's still going to get worse before it gets better. But we are on the right track. Please keep me in your prayers over the next few weeks as I try to continue to sort everything out. I will try to post updates here as often as I can. If you have any questions about mast cell or just questions in general please reach out! Thank you for coming along with me on this journey! 

With Love, 

Elizabeth <3