A meltdown in my room of Hell-Crest Commons, the nursing home I’d been living in for three months, had prompted that awful nurse practitioner, to send me to the hospital to get evaluated by psych crisis. Jillian was my primary care provider at the nursing home.
Who wouldn’t have had a meltdown after that meeting though? At the meeting they told me that I was faking all of my illness because I liked being sick and that she was going to stop my IV fluids. My IV fluids were keeping me alive. They were one of my main treatments, but that wasn’t even the worst part of the meeting.
At the meeting they had dropped the bomb on me that I was never allowed to go back to living at home.
After the meeting I went back to my room where I couldn’t stop crying. Tanya the social worker, and … Find Out What Happens Next
The crazy primary care provider at Hell-crest Commons, the nursing home I had been living at for a little over three months was in the process of killing me. She was trying to wean me off of my life-sustaining IV fluid infusions that I ran all day and night through my port-a-cath in my right chest. Over the last two weeks I had been weaned from 2 liters too 1.25 liters and each drop made me sicker and sicker.
Three days after Jillian took me down from 1.5 liters of my special combination of IV saline, potassium, dextrose, and multi-vitamins to 1.25 Liters a day, they had to rush me had been rushed lights and sirens to Trauma Room One of Berkshire Medical Center. It took them a while too stabilize me in the ER, but once they did they brough me to my room in the ICU.
I had been living in a nursing home that I had not-so-jokingly been referring to as Hell-crest Commons for months, with its’s evil nurse Ratched (Ahem, I mean Jillian) the nurse practitioner who was my primary provider and in charge of my care there.
After spending 5 months at Massachusetts General Hospital in 2014 I had learned that I had a severe and rare condition called Autoimmune Small Fiber Autonomic Polyneuropathy (Autonomic SFN) and would require IV fluids and tube feeds or TPN (IV nutrition) for the rest of my life.
Flash forward a year, I had spent three months at my local hospital for what started as a bowel obstruction and then just morphed into a whole bunch of other issues. During that hospitalization I just got so sick that there was no way I could just go home from there, so I had been transferred to Hell-crest Commons … Find Out What Happens Next
Tuesday morning, I woke up early. Usually, I tried to sleep as late as possible because there wasn’t much to do in Hell-Crest Commons, the nursing home that I’d been living in for months now. The only times I’d get up early was if they for some reason scheduled PT or OT early. This time I had an appointment that afternoon with the Nerve Injury Clinic. The Nerve Injury Clinic was at Mass General Hospital in Boston. They were the ones that had done my skin punch biopsy while I’d been at Mass General for 5 months in 2014. Dr. Hurrowitz who was my primary neurologist there was the one following me. He had been the one that had originally come into my room at Mass General to tell me that he knew what was wrong with me and had proceeded to explain my new diagnosis to me.
Life is a funny thing, you squeeze onto it too hard and it slips out of your grasp.
Starting from when I was eight years old I’ve been sick.
I had my first hospitalization and my first feeding tube and my first surgery in the year 2000 at age 10. In 2012 I had a tumor removed from my brain. In 2013 I was life-flighted from my local hospital to Mass General Hospital to have a brain bleed repaired. In 2014 I became so incapacitated by a mystery illness that obviously went deeper than just gastroparesis alone or just a brain tumor alone, or just a neurogenic bladder alone, that I spent 5 months at Mass General hospital getting stabilized and getting tested until we figured out what was wrong with me. In the spring of 2015 I had spent three months at my local hospital for a bowel obstruction … Find Out What Happens Next
As time went on at Hell-Crest Commons, the nursing home I’d been living in since July of 2015 I was slowly settling in. I would work on classes for college online (I was only a couple classes short of graduating with a degree in Professional Writing Studies and a GPA of 3.98 from Elms College), I would go to some of the activities groups, I had gained privileges to wheel myself around the grounds of the nursing home by myself and I would go to the coffee shop and chat with various visitors, people from my unit that I met down there, and people from other units. Some days I would go down to the lobby to sit on the couch and read or work on a personal writing project or make personal phone calls to friends from Facebook or family.
Feeding through a J port is supposed to help people with gastroparesis get much-needed nutrition that they can’t get by eating orally or by getting fed through a G tube. A person with gastroparesis has a paralyzed stomach so a J tube which goes straight into the Jejunum skips over that paralyzed stomach and goes right into the middle of the small intestine is a way to give the person.
Now that I had the tube feeds and the IV fluids, I was feeling a lot better physically most of the time as I wasn’t actively starving to death, but I would still have breakthrough periods where the pain would get intense, or I’d get nauseous and start vomiting huge volumes of bile and/or tube feed. The tube feed was going into my intestines through my J tube, which was supposed to prevent me from vomiting it up. Still, it … Find Out What Happens Next
I’d had a rough ride through childhood and had spent it going in and out of hospitals due to gastroparesis, an inability to maintain a normal heart rate and rhythm, blood pressure issues, frequent passing out, hypovolemic shock, frequent infections, and dehydration. For much of my childhood, I’d been dependent on an NJ tube for feedings. I’d been followed by an adolescent medicine doctor, a gastroenterologist, a cardiologist, a psychiatrist, a therapist, an infectious disease doctor, and a nephrologist (kidney doctor). It was a couple of days before my one-month follow-up with Dr. Green, the nephrologist, but on July 2nd I was celebrating my nineteenth birthday and I was also celebrating my graduation from high school and the end of my first year at Holyoke Community College. My family and I were too busy to worry about how disabled I was, we were celebrating two major milestones in my life … Find Out What Happens Next
On July 2nd, my parents, paternal grandparents, maternal grandmother, cousins, and a few friends from my homeschooling groups, and college were all gathered to wish me a happy birthday and celebrate my high school graduation.
This was a day that back in the sixth and seventh grade no one was sure would ever happen. Yet here we were, with me already having completed a year of college, and maintaining a GPA of 4.0.
To your average Jane Doe, completing a year of college and turning nineteen might not seem that monumental (well I’ll toot my own horn, maintaining a 4.0 GPA is pretty impressive), but when you have a degenerative chronic illness nothing can be taken for granted. I was diagnosed with gastroparesis at the age of ten and my health has just steadily gone downhill from there to the point where more of my childhood was spent in the … Find Out What Happens Next
If you wanted to look up the word sick in the dictionary, you would probably find a picture of me. Ever since I was eight years old and started struggling with muscle fatigue and appetite loss I have been on a downward trend in my health. By the time I was ten I had had my first NG tube. This was followed by my first surgery when the NG tube caused a bowel obstruction. Then I had to deal with an even thicker NG tube to suction. This was followed by my first NJ tube.
I spent a good chunk of fifth grade in the hospital, and went home from the hospital with the NJ tube still in place and a diagnosis of severe gastroparesis. The rest of my childhood was spent racking up frequent flier miles at my local children’s hospital. At age thirteen my heart rhythm disturbances took … Find Out What Happens Next
