January 2020 Medical Update

After my appointment in Boston in April 2019, we decided to add a new medication called Xolair to help control my Mast Cell reactions. I started at one injection per month and after seeing positive results we increased the dose to an injection every two weeks. However, as the months went by, I started to build up an intolerance to the medication to the point that the negatives outweighed the positives. 

Throughout November and December, I have felt consistently weaker and have had to spend even greater amounts of time in bed each day. It has been very overwhelming both physically and emotionally. I try to stay positive but it can be very difficult to maintain positivity when my suffering is so severe day in and day out. I have been having anywhere from five to six strong episodes a day requiring medication intervention. Between these episodes, I am exhausted from what I have physically gone through. My symptoms never truly go away, they are just minimized temporarily by the medication. 

In December, my health seemed to hit a low point with constant swelling of my face, daily cyclical vomiting, and exasperation of all other reactivity symptoms including rashing, difficulty breathing, nausea, throat tightness, difficulty swallowing, headaches, fatigue, itchiness, and muscle and joint pain. I was unable to hold down food for two weeks straight which led me to the hospital for IV fluids. After that, we decided to stop the Xolair mediation for now in hopes that my symptoms will calm back to my previous “norm.”

Back in 2017, I had a HIDA scan that diagnosed me with biliary dyskinesia. This is a fancy way of saying that my gallbladder doesn’t squeeze properly. Biliary dyskinesia is diagnosed anywhere from 35-45% function of the gallbladder and my scan came back at 17% function. We decided not to do surgery at that time because of the risks associated with gallbladder removal for someone with my health concerns. However, after my excessive vomiting episodes throughout December 2019, my doctor sent me in for a sonogram of my gallbladder on the 31st to check on its status. My test results showed that I have developed several gallstones and that surgery is now a must. 

My gallbladder surgery is scheduled for Monday, January 13th at 2 o’clock. For normal,  healthy people this would not be a terrible surgery and would occur in an outpatient facility. However, my surgeon has ordered it to be done at the main hospital. This way we have the option for me to stay overnight if needed due to the unpredictability of how I will respond to the surgery. They do not know how my body will react to everything and carcinoid syndrome can make anesthesia tricky. I am terrified of the surgery but I feel as though I am in good hands. 

We hope that after this surgery, my cyclical vomiting episodes will decrease in severity and frequency. 

Thank you for taking the time to read this post and your continued support means more to me than you know.

Left: Me at the hospital receiving IV fluids. You can see how swollen my eyes are.

Right: Pictured is an up-close example of my facial swelling and rashing.

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