Four rounds of IVIG. Each round spaced four weeks apart. All with hopes of a change for the better. However instead of better, we have a MIRACLE! A true miracle from God.
Last week I had my manometery study. From the moment everyone looked at the testing screen people were in shock. We saw lines. Lines mean movement. Movement means my gut is contracting. This is a complete 180 compared to my previous motility studies. This Monday I had my Gastric Emptying Scan (GES). Normally when I do a GES my meal ends up never fully leaving, or we have to end the study due to it taking too long. At two hours I was informed 65% of my meal left my stomach. Goosebumps. Shock. Chills. My Mom and I then anxiously waited to hear the final result. At three hours, 91% of the meal left my stomach. Sobbing. Crying. Hugging. For the first time in over three and a half years, my GES results were normal.
What does this mean? I can eat again! I am allowed to eat for the first time in over three years. For the first time in two and a half years I am off TPN. For the first time since 2016 I am not declared to be in Intestinal Failure.
After years of trial and error my doctors think they have pinpointed the cause of this ongoing fight: my immune system. After successfully starting the treatment of IVIG, my health and quality of life have drastically changed.
Since late Monday afternoon I have been in a world of bliss. It feels like a dream. Learning how my meal plan must be six meals throughout the day. Hearing fluid requirements. Learning about my new need for 70 grams of protein. Its all overwhelming beyond words… going from being told to not put anything inside of me, to being told to consume as much as I can. Yet I am overjoyed and endlessly grateful.
We have not a clue where our path is heading now… we do not know if I will be in a state of Pseudo Obstruction and Gastroparesis again, if I will have flares, if the IVIG will soon not be enough. However, what we do know, is we are currently living a miracle, and we are going to treasure every moment. I enter this new chapter with a bit of anxiety over the world of eating again, not wanting to mess anything up, but with so much gratitude that I could hug every single person I see.
We do know the path for the upcoming days. Tomorrow we get discharged and the weekend is filled with a bucket list of wants and dreams I have had for three years: Panera, Culver’s cheese curds, Bowl of Heaven, pizza (oh my gosh), fruit, Mexican food, chips and queso, salads, veggies… most of all, regaining myself again. Being able to join my family at the table for meals, chatting about our days and thoughts. Helping create things in the kitchen. Getting back into my passions of cooking and baking. Living, I am excited to truly be living. This weekend is just what we need before I am being admitted again next week for round five of IVIG through Thursday.
With this incredible miracle, the doctors are planning on writing a paper on my case and all that has happened. Hearing this reminded me that I want to help, and pay it forward. I want to display the kindness everyone has given us to those still in the trenches. We do not know when I will be in the trenches again, but we know firsthand what it is like to be trapped in that spot. To those like us, who are too complex, not understood, don’t “fit in a box”, must just be “anxious”, are not believed by doctors: keep fighting. Keep searching. Do not give up. Demand a brilliant future for yourself. Know that within the community of Peace Within the Fight, we believe in you. We are here for you. Keep the faith. Keep believing. Keep fighting for your miracle.