Patient Headlight Feature: “TPN Saved My Life” by Samantha H. Smith

Hello readers,

August is Digestive Tract Paralysis Awareness Month – a huge phenomenon! We at G-PACT have a lot going on, not the least of which are some fantastic guest writers for our blog.

Today we’ve got Samantha H. Smith:

Samantha
Samantha H. Smith

Samantha is 27, from upstate NY. She lives with a few chronic illnesses, one being Gastroparesis, but that doesn’t prevent her from being a runner and a strong writer for the GP community. She has a Bachelors degree in forensic psychology that she hopes to have a career in someday. Samantha recently became a member of the Chronic Illness Bloggers Network , and she was nominated for a WEGO Health award for her blog HUSTLE & HEART which definitely deserves a visit.

 


8/1/17

When I was diagnosed with gastroparesis, 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 TPN (Total Parenteral Nutrition). 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 lay 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 3x 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.

— Samantha

IT’S OKAY NOT TO BE OKAY

In this guest post by writer and runner Samantha H Smith, we hear about loss – sadly, an ongoing problem in the gastroparesis community. Samantha has dealt with plenty of it, but she finds strength somehow.

“It’s Okay Not To Be Okay” – by Samantha Smith 05/15/17

I’ve been sitting here trying to write about loss for a few days now. Some days, my mind just doesn’t want to form words, or even try to comprehend all the emotions I’m feeling.

Recently, the GP community lost a sister; a brave and beautiful soul who meant the world to many people. I myself considered her a good friend; someone I was truly lucky enough to know and love. She was the kind of person who no matter what she had going on, she made time for you.

When I was at my sickest, and TPN became a reality, Dalia was right there, offering hope, advice and comfort. I’d always considered her a friend, but it was during that time that we grew close.

Everyone will experience loss at one time or another. Someone in your life may die. You may lose a job, a friendship, or a significant other. Loss is difficult, but loss is normal. I want you to know, it’s OKAY to not be okay. It’s okay to have bad days. Some days, the pain will be less, and you may be fine. Some days, the pain may be so overwhelming you can’t get out of bed. I’ve learned to be okay with myself during both days.

Just remember, it won’t last forever. Things will get better. You WILL be okay.

 


Samantha is 27, from upstate NY. She lives with a few chronic illnesses, one being Gastroparesis. She has a Bachelors degree in forensic psychology that she hopes to have a career in someday. Writing and running are both passions of hers. You can find more of her writing at her blog https://hustleandheart2016.wordpress.com/ .

Image credit: www.snappygoat.com