Amanda: The Real Life Journey of A Newbie Tubie Volunteer

“Hiyo- I’m Amanda Hall & I used to be a tubie and am still living with chronic illnesses! I woke up November 3 of 2012 with what i thought was the stomach flu, but I never got better. I was told I had the second most severe case of Gastroparesis at Cleveland Clinic in Ohio, actually same results as Rachel, the NewbieTubies director! Eventually, I chose to use my rare for research. When i first got my diagnosis, i thought gastro-what?! This journey has taken me on a wild ride, but dang did life become so much more beautiful than I could have ever possibly imagined.

6 years ago I was 175 pounds, a college volleyball player, and a personal trainer. i worked 2 jobs and went to nursing school; I studied health, fitness, and nutrition like it was my job. I went to bed completely alive, and in one 8 hour night of sleep, I woke up undeniably dying. i lost 50 pounds almost immediately and my journey with feeding tubes started 6 months into this wild ride. My first tube was an NG tube, then a G tube, then a J tube… then a G-J tube. I didn’t have time to stop and think about what was really happening- I was just grasping to an inkling of hope for a chance of ‘normalcy’ again. After multiple attempts, my body wouldn’t accept a feeding tube, and I graduated to a hickman catheter for tpn. I know this all may seem overwhelming at the beginning, but namaste!- this tube is going to GIVE YOU LIFE!💫

Throughout the many years of fighting so desperately, my body started recating to every adhesive and physically rejected every forein object they put into my body. I would cycle thru feeding tubes like I was at the carnival. But, man did those feeding tubes allow me to be a kid again. they gave me energy, adequate nutrition, vibrance, and kept me alive when my body couldn’t figure out what it was supposed to do.

After 5 years and 24 extensive surgeries, I reached the end of my treatment options and chose to remove my stomach in the hopes that it would help improve my quality of life and offer reasearch for future generations who will be struggling behind me. In December of 2017, i went in for a partial gastrectomy, but because of complications, i came out with a stromach the size of TWO TABLESPOONS! My recovery was long and full of complications, but I am confident in saying that my Gastroparesis has been put on the back burner, rather than igniting a wildfire every. single. day. So worth it.

I graduated indefinitely from tubes in August of 2018 when my body began reacting to every tube placement with sepsis, and the life-threatening risk became greater that the life-saving reward. My last feeding tube was removed in March of 2018 due to severe sepsis, fungal and bacterial infections. i thought i beat it, but life would never be the same for me again. Sepsis and Gastroparesis quite literally knocked me off of my feet when I was hit with dysautonomia 3 months back.

As part of my treatment, i go to an infusion clinic 3-4x per week for saline infusions. Although I can’t have a tube permanently anymore, I am still a tubie more than I am not!

Yes- it’s scary, uncomfortable, disheartening, and frustrating… but I found that I was so much stronger at my lowest weight with a tube hanging out of my chest than i was at my highest weight, obnoxiously fit before I got sick. It’s all about perspective. and being kind to yourself.”

*Amanda shared her story with us and has joined me and my supporters in our journey to continue Newbie Tubies and grow as we can. I receive applications every day, and without the help of my donors and volunteers, it wouldn’t be possible. Thank you, and for more info, check out the section on newbietubies or find us on Instagram @newbietubies. We are always happy to hear from new people interested in learning about the project!*

Rachel

Published by

positivelyrachel

My name is Rachel and I'm a 21 year old living with multiple chronic illnesses. My illnesses have completely my life, but they have also taught me so much about life and about myself. Although I am currently unable to attend school, I am enjoying writing and spreading awareness about these illnesses. I also love spending time with my family, cuddling with my dogs, cooking, and (attempting) to paint! I hope you enjoy reading :)

Leave a Reply