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.
Although I was born healthy, the normal-happy-kid-thing didn’t last long. At age eight, I started having trouble walking long distances and standing for prolonged periods of time. My legs would get all wobbly and the room would get swirly and I would just feel exhaustion sweep over me like a blanket covering me from head to toe. I would just want to lie down on my bed, curl up around my collection of teddy bears, and take a nap, and that was even before I developed a brain tumor.
Things had significantly deteriorated by the age of nine. By the age of ten things were so bad that I’d had my first hospitalization because it became physically impossible for me to hold down any food or drinks. I ended up with my first NJ tube and my first surgery. The diagnosis was gastroparesis. The rest of my childhood was spent … Find Out What Happens Next
Ever since I was ten years old I had carried a diagnosis of a chronic, incurable disease called gastroparesis. Really my issues started at age eight and become undeniable around age nine, but back then everyone wanted to blame my GI symptoms on things like stress, control issues, behavior problems or even eating disorders. At that point, there was no mention of any pituitary tumor.
At age 19, I found out that I also had a brain tumor growing on my pituitary gland. My kidney doctor, Dr. Green, had ran test after test on me, swearing she’d figure out what was wrong with me until on a whim she ran a 24-hour urine collection for cortisol and creatinine on me,
She didn’t expect to find much, as my blood levels of cortisol were normal, but she had exhausted all other options and knew something was wrong with me. Dr. Green … Find Out What Happens Next
My safety net was what my whole life manageable. My life was pretty much one big medical issue. Luckily I had two parents and two brothers to support me. My safety net was made up of two people, my mom, and my dad.
They didn’t always make the best decisions for me, in fact, sometimes their decisions messed things up for me really badly, but they loved me 100% unconditionally and always tried their hardest to make the best decisions for me.
It all started when I was eight and began dealing with muscle fatigue, then when I was ten I first got diagnosed with gastroparesis (a paralyzed stomach) and had to have emergency surgery to have 2.5 inches of dead bowel removed and then had to have an NJ tube placed.
As the holiday season was going into full swing and most people were worried about what presents they were going to get for their boyfriends or parents, I was busy worrying about my upcoming neurosurgery. Being sick and needing surgery was nothing new for me, but I had never had my brain operated on before.
At the age of ten, I’d been diagnosed with a chronic, degenerative form of gastroparesis, and as I got older it became evident that there was something further wrong with me as well, but no one knew exactly what. We certainly never had the idea that I had a brain tumor and would need neurosurgery to have it removed.
I spent my entire childhood, from 2001 to 2010 going in and out of hospitals for heart issues, blood pressure issues, hypovolemic shock, electrolyte issues, passing out, and complications from gastroparesis. When my blood pressure issues … Find Out What Happens Next
About four or five years after my heart problems had climaxed, my blood pressure took a surprising turn.
My whole life my blood pressure had run so low we worried about me tripping over it. This had always been concerning to Dr. Oster and my other doctors because with such a high heart rate and such low blood pressure it was too easy for me to go into hypovolemic shock. In fact, one of the reasons I was admitted to the hospital so frequently was due to hypovolemic shock. We referred to it as bottoming out.
When I bottomed out, I would turn bluish-gray, get really clammy, and if I caught it myself before it got too severe, I would call for my own ambulance from wherever I was. It was the worst when I wasn’t home and was in an embarrassing place. An embarrassing place was pretty much anywhere … Find Out What Happens Next
