Patient Headlight: Abigail the Visible

8/16/17

Patient Headlights are a way we here at G-PACT can acknowledge heroes from the Gastroparesis community. Today we’d like you to meet Abigail Miller, a young woman who is learning how to live with her gastroparesis.


Abigail Miller is from Pineville Louisiana and she has had gastroparesis since September of 2010. Well, that’s not quite true. Abigail began experiencing gastroparesis-related problems 6 months before her diagnosis.

Diagnosing gastroparesis can be very challenging. The most common cause of gastroparesis is damage to the vagus nerve, and the most common cause of such damage is diabetes mellitus. Diabetes is common; gastroparesis is not. A doctor is more likely to treat the disease he knows. Additionally, gastroparesis and other forms of Digestive Tract Paralysis (DTP) do not have a common diagnostic test. A gastric emptying study can be done and remains the gold standard for diagnosing DTP, but that is not a common test used to diagnose the most common complaints of patients (nausea and vomiting). This is partly why Abigail and so many others can go so long without a proper diagnosis.

Even once diagnosed, gastroparesis does not have a cure. So after 6 months of tests and doctor’s visits Abigail learned she had a disease that wasn’t going to go away. Two years after being diagnosed, things had gotten difficult enough that she ended up getting a gastric stimulator implanted. It was very helpful at first. Unfortunately, like many who have tried this procedure, it stopped being effective.

Having a chronic disease means learning to live with setbacks, having to explain yourself over and over, and not being properly understood. “Still, the worst part,” says Abigail, “is the friends you lose and the major changes you have to make to your life. I had to learn a completely different lifestyle. I gave up sports, friends, school, all because I have been sick.”

Learning how to live with a chronic illness isn’t easy, but Abigail has come up with some good methods. When she’s feeling ill Abigail says, “I like to paint or draw, and I like to snuggle with my dog.” She also makes sure to not let her disease take over her life. For instance, when she’s able, she likes reading, drawing, “hanging out with friends and volunteering at a local humane society.” These things help her stay positive during the hard times.

Abigail Miller
Abigail and her dog

When we asked Abigail what advice she would have for others who are experiencing this disease, she had some great wisdom to share. “Draw, read, snuggle a pet, hang out with family or friends, because as soon as you give up, those things will go away, so cherish them now. Try to see the positive side of things.” With good sense like that no one would be surprised if someday she becomes a very important voice for supporting the DTP community.

As for the world at large, Abigail wants everyone to know that “Invisible illnesses are real, and just because I don’t look sick doesn’t mean I’m faking it.” And that is a big part of what Gastroparesis Awareness Month is all about – not just helping the people with the disease, but helping doctors and parents and children understand better what people are experiencing. People don’t always take the time to stop and understand the challenges their fellow humans encounter, but in August, Abigail and G-PACT, and so many others, and YOU, get to take a moment and help others understand.

 

Thank you Abigail. Keep being awesome!

“He Most Certainly Would Have Starved” – the story of Lucas and Traci Nagy

August is Digestive Tract Paralysis Awareness Month. During this month we’re going to be featured some stories from people who are influential or inspiring in our community. Today we’d like to share the story of Lucas Nagy and his mom Traci.


 

He Most Certainly Would Have Starved

by Jim Sliney Jr

Traci Nagy is the mother of Lucas Nagy. Lucas was first diagnosed with delayed gastric emptying when he was only 3-months old, though his challenges began from the day he was born.

“He wasn’t able to tolerate bolus tube feeds,” Traci told us. “It wasn’t until he was 20 months old when he was diagnosed with Koolen de Vries Sydrome.” Koolen de Vries is a disease characterized by delayed development and mild to moderate intellectual disability. The diagnosis helped make sense of his gastroparesis: his digestive tract could not function because he had not developed sufficient muscle tone. Lucas had to live with a feeding tube.

Lucas is 9-years old now, and he functions much better than he did as an infant, in large part because he gradually developed the muscles that had been so weak and put him at a disadvantage at birth, but also because of his feeding tube regimen. “We’ve been able to adjust his feeds depending on how his motility is on a given day.” That kind of insight and flexibility is important when relying on tube feeding; it helps keep nutrition in balance. Lucas’ ability to get constant nutrition has helped him grow and thrive and enjoy his childhood.

“Lucas loves trucks and buses and elevators. Ironically, he loves supermarkets and pushing the shopping cart.” But as his mom, Traci says, “the worst part of his illness is that Lucas has not known life without these problems.”

It might be instinctive to imagine a hard life full of setbacks and challenges, but good has come from Lucas’ illness too. In 2010, Traci founded the Feeding Tube Awareness Foundation (FTAF), which supports the parents of children who are tube-fed (parents like Traci). The FTAF is a 501(c)(3) charitable organization run entirely by other parents who volunteer their time. “I wouldn’t have started the FTAF if Lucas’ life wasn’t saved by tube feeding. He most certainly would have starved without it.”

Life can indeed be challenging when someone you love-unconditionally is saddled with a disease that has no cure. It means a new life for the person with the disease, but also for the people who love and care for them. We asked Traci what, with all of her experience, would she say to someone else who has just confronted their own chronic illness or the illness of a loved one. “Connect with other people. People who have been in your shoes. They will have information, resources and advice that can help you. Also, find a doctor who listens – one you can trust. Remember, you’re not alone in this.”


If you have a story to tell about your gastroparesis contact our Newsletter Editor, Jim Sliney Jr at slineyj@g-pact.org and we’ll help you tell it.

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