Why Total Parenteral Nutrition Saved My Life
Written for the Digestive Tract Paralysis Awareness Month in cooperation with G-PACT (Gastroparesis Patient Association for Cures and Treatments).
When I was diagnosed with gastroparesis (GP), I was given very few options, as is the same with many of us in the GP community. I felt lost and confused. Diet changes were an obvious necessity and it was trial and error to find out what I could tolerate and what I couldn’t. The medication options seemed safer, yet the side effects were scary. The other options, like a feeding tube, were more invasive, required surgery, and that in itself was a whole new level of scary. I didn’t know what to do.
Whether or not you have mild, moderate or severe gastroparesis, it sucks no matter what. For a while, I managed with dietary changes and restrictions. The medications made me feel worse. I was sick enough to have serious issues, but not sick enough for drastic measures to be taken. It left me wondering how much I had to suffer before I could get some real help.
From what I’ve read and heard from others, this is a position that a lot of GP patients end up in. Without more treatment options, this is where a lot of us become stuck.
Unfortunately, I ended up needing total parenteral nutrition (TPN). After months of constant vomiting, I’d become so malnourished I was scared. I was getting IV calcium electrolytes and fluids at my local hospital every single day for over a month. It was barely keeping my head above water. I remember so many days I’d lie in bed at night wondering if I’d even open my eyes in the morning. Everything hurt all the time. My body was barely keeping down 100 calories a day.
I was leaving the hospital after an infusion on one of my worst days. My blood pressure was in the toilet. I was dehydrated even after fluids. I got into the car with my dad and called my endocrinologist. I told him I was scared I wasn’t going to make it. He immediately made phone calls to get me an appointment with the best MD in clinical nutrition in the area. It was the help I so desperately needed.
I was admitted into the hospital to start TPN on the day of my first appointment with the clinical nutrition doctor. I knew my care was in the right hands.
TPN is scary. It comes with risks in itself, sepsis being the big risk. Prior to this, I had a port for almost two years which is why I opted to start TPN instead of having a feeding tube surgically placed. I needed calcium infusions three times a week for over a year due to hypoparathyroidism. Since I would still need the IV calcium, which could easily be added to TPN, that was the best choice for me.
I made it almost six months before I had any real issues being on TPN. About an hour into running TPN one night, I knew something was wrong. I took my temperature and it only confirmed what I already knew by the fever pains and chills: sepsis. I ended up on antibiotics for a while, and when they didn’t work, I had to go in to have my port removed and replaced. July of 2016 was a hard month for me. My body and I went through a lot, but we came out stronger.
I never thought I would rely on an IV for the majority of my calories. I never thought I’d get malnourished enough that I’d need it. And now, I’ve been on TPN about a year and a half. As much as it sucks to carry a bag around for 10 hours a day, I wouldn’t change it. TPN gave me my life back. Actually, it saved my life. I’m at a stable healthy weight. I’m able to eat more and function better. I’m grateful for TPN every day.
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