Six months after my admission to Hell-crest Commons I was finally preparing to leave. I wasn’t going home. My relationship with my parents had changed completely. But I was preparing to leave. My feelings about the situation were very mixed, but I was very happy that I would no longer be living on a medically complex floor of a nursing home. No matter how nice and buddy-buddy Jillian the nurse practitioner at Hell-crest Commons had tried to become with me, I would never be comfortable with her. Not after everything she had put me through.
However on Monday, the day before my official discharge date, she found me in my room early in the morning and pulled me into her office.
“Can you transfer yourself into that crappy nursing home wheelchair and meet me in my office?” she had asked me.
Tuesday morning a woman from a place called Adlib came up to my room to introduce herself to me and do an intake meeting. She was a sweetheart. Her job was to figure out if I was appropriate to get support serviced from Adlib one of which would be getting into an Assisted Living called Side By Side. For the last six months, I had been living on the intensive medical/Ventilator floor of Hell-crest Commons, but now they were kicking me out because although I had made a whole ton of progress in PT and OT I had made about as much progress as was humanly possible for me in my condition and my progress had plateaued. I had spent over two weeks trying to figure out where I was going next, now that I was going to be discharged from the nursing home, as my parents were refusing to … Find Out What Happens Next
My life hung in the balance as I waited for 24 hours to hear back from my mom about whether my dad was going to give the final yes or no verdict about whether or not I could be discharged to Side By Side Assisted Living and have some sort of future.
I needed my parents to pay for private duty CNA care, three hours a day for the next 2 to 4 weeks so that I could go the assisted living. Otherwise, Side by Side was completely off the table because I needed someone to be able to carry me up and down the four steps leading into my apartment in addition to helping me with all of my care. If my dad said no to this, I was going to end up in a homeless shelter. Because I am 100% dependent on IV fluids, tube feeds, oxygen … Find Out What Happens Next
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
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
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
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
