During a three month long hospital stay for a flare up of my autoimmune-mediated small fiber autonomic polyneuropathy I went downhill so fast that I couldn’t even sit up on my own, I could barely lift my head off the pillow some days, let alone bear weight and transfer into my wheelchair, I went in ambulance for an hour-long ride down to Hillcrest Commons the nursing home/rehab that I was supposedly going to for a few weeks or months for intense rehab, so that I would get enough strength to function outside of a hospital or nursing home environment.
Hillcrest Commons is located in Pittsfield which is in the Berkshires (part of Western Massachusetts) so it’s a very beautiful location. It’s right on the border of upstate New York and it’s near the Vermont border as well.
About an hour earlier I had arrived at the only rehab/nursing home in the area that would take someone as medically fragile and medically complex as I am. The nursing home was called Hillcrest Commons, but I had started to call it Hell-crest Commons. From the moment I rolled in the door I knew I was in trouble, but when I med with the nurse practitioner that would be in charge of my case while I was there, her name was Jillian, I had full force alarm bells going off as loud as possible in my head. She basically told me that my disease wasn’t really as bad as I thought it was and that I didn’t need my tube feeding or my IV fluids. I knew this was wrong, I knew what the leading experts in the world on my disease had said about my treatment and I was … Find Out What Happens Next
I had been at Hillcrest Commons (Or as I liked to refer to it, Hell-Crest Commons) for 3 months. Jillian, the nurse practitioner overseeing my care, decided that we needed to have a meeting with all of my care team and my parents.
The meeting was an absolute disaster.
Every time I tried to talk to Jillian she insisted that my disease wasn’t as bad as I said it was and that she could get me off of most of my meds, off of the IV fluids, get my port removed, get me eating again, get my GJ tube removed, and get me walking with no assistive devices. She had shared this viewpoint with my parents and got them so full of hope that they were willing to do just about anything with me or to me in order to get me there.
Living at Hell-Crest Commons was a nightmare. After a three-month-long hospital stay at my local hospital for a flare up of my autoimmune-mediated small fiber autonomic poly neuropathy (that was getting worse and worse every few months) I had gotten really deconditioned.
“You need a whole lot of PT and OT to get you back to a point where you can function at home and in the community,” the doctor and case manger both had explained to me months ago. My impression of the situation was that I was going to Hillcrest Commons for a few months for therapy and then going back home.
After three months at the nursing home, we had a big meeting and they dropped a bombshell on me. My parents weren’t going to let me come home. They didn’t want to take care of me anymore because they wanted their ffreedom. I was a burden … Find Out What Happens Next
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
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
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
