Chronically Alive

My Gastroparesis is Kicking my Butt

By the end of Spring 2014, I was down to 76 pounds at 4’10. My gastroparesis was kicking my butt. I was living off fruit smoothies that I desperately tried to bulk up with extra sugar for added calories, and sips of Gatorade or Pedialyte.  Despite my fervent efforts, I was still losing weight.

I’d had my first gastric emptying study and endoscopy fourteen years earlier. The gastroenterology team had told me that I had one of the most severe cases of gastroparesis possible. Repeated testing over the years showed that my disease was worsening and that my entire digestive tract was mostly paralyzed and couldn’t absorb nutrition.

Fourteen Year’s on the Medical Roller Coaster of Gastroparesis

Over fourteen years I had repeated medical testing around the progression of my gastroparesis. I had a Sitz study done, an upper GI, another gastric emptying study… Find Out What Happens Next

For months I pleaded for people take my symptoms seriously. Sadly they just kept getting brushed of as being all in my head. Finally Dr. Trisch, my new GI doctor insisted that my mom take me to Mass General Hospital. I had gone an entire month and a half of surviving on basically no nutrition. Dr. Trisch flat out told my mom that if she didn’t get me to Mass General Hospital I was going to die.

My mom hadn’t even begun to realize how sick I actually was. She had thought the triage nurse at the ER at Mass General Hospital, would take my vitals and stick me in the waiting room to wait for the more critical patients to get seen first and then hours later they would take me in and give me some fluids and send me home.

Instead, the triage nurse rushed me to one … Find Out What Happens Next

Complex Care Team Ordering My First PICC Line

These days, getting a PICC line doesn’t really phase me anymore, but back in the summer of 2014 when the Complex Care Team at Massachusetts General scheduled me to get my first ever PICC line, I was a ball of nerves. I had been at Mass General Hospital for two weeks plus some change, but still couldn’t keep even a few sips of water down. The severe gastroparesis that I had been battling since age eight wouldn’t allow that.

Why Does the Complex Care Team Think I Need a PICC Line

My small intestine was affected too. So I also wasn’t able to get enough water through my NJ tube either. I couldn’t even tolerate a high enough feed rate without adding in a 30 ml water bolus. How in the world would they be able to add in another 30 ml … Find Out What Happens Next

How Many Times Have You Been to the Hospital

Most people who don’t have Small Fiber Autonomic Polyneuropathy have been to the hospital or the ER once maybe twice by the time they are 23. Usually, they are either just in the ER for a few hours for something like getting stitches, or a broken bone x-rayed, set, and casted.

Sometimes they may have a tooth that is hurting and needs antibiotics and pain control before they can get in with a dentist or oral surgeon. Other times it’s something more serious like a car accident or a heart issue. There may be a reason they went to the ER and got admitted for surgery, like appendicitis, or kidney stones that won’t pass on their own. Diabetics might get admitted for DKA.

The Search for the Underlying Diagnosis

At 23 years old I had been in the hospital way more … Find Out What Happens Next

My History of Gastric Emptying Studies and Thinking About a GJ Tube

My first gastric emptying study ever, was done at age ten. It was right after having emergency surgery for a bowel obstruction. The bowel obstruction had been caused by a bezoar that had formed because of my gastroparesis. The gastric emptying study had shown that my gastroparesis was as severe as they come. My stomach was close to 100% paralyzed. Back then they inserted my first NJ tube. That was when the idea of a GJ tube was first tossed around.

Over the last fifteen years, I’d had several more gastric emptying studies that had shown pretty much the same results. Some of the scans were a little worse. Other scans showed some improvement, but then a few months later were worse again. That’s normal for gastroparesis patients. Gastric emptying studies will always vary day-to-day based on … Find Out What Happens Next

After getting a GJ tube placed for my severe and debilitating gastroparesis I was in a whole lot of pain. It felt like I’d been gutted alive and no matter what position I lay in, I just couldn’t get comfortable. Just when I was finally starting to get semi-okay with pain control, I had to get my Port-a-cath placed.

What is a Port-a-Cath?

A Port-a-cath is a small little plastic reservoir with tubing attached. The reservoir gets placed into a surgically created pocket in the chest and has tubing coming out of it that leads to the big vein that dumps directly into the heart. After the port-a-cath is placed the skin gets glued back over it.

When you need to hook the port-a-cath up to IV fluids you have to “access” it. You do the same thing if you need to do a blood draw, or put medication through … Find Out What Happens Next

So much in my life had changed in the last four and half months that I had spent at Massachusetts General Hospital. The most major change was that I finally had a name for the dark cloud hovering over my life. After putting me through the washing machine on the highest spin cycle with relentless testing, we had a diagnosis. This diagnosis tied all my millions of symptoms and other diagnoses together. I had a disease called Autoimmune-Mediated Small Fiber Autonomic Polyneuropathy and it was causing my entire body to go haywire. Including my mind which was why I was currently on the medical psych unit at Mass General Hospital

What is Hyperalgesia and Drug Induced Psychosis

Although I had been deemed medically stable, I was feeling on shaky ground emotionally. After having my GJ tube and port placed I was put on a ton of liquid morphine via my … Find Out What Happens Next