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.
After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed … Find Out What Happens Next
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.
