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 for rehab where Nurse Ratched had taken over my case and got the bright idea that I was just “wanting” to be sick and that she was going to “fix ” me. She began to decrease my IV fluids a little bit each week until she got me down to 1.25 liters of D5W with 40MeQ of potassium a day. At that point I got so dehydrated and my potassium got so low that I went into a near lethal hear rhythm and came within minutes of dying. Luckily I went to Carl when I recognized the cardiac symptoms, who called 911 instead of messing around calling Jillian (Nurse Ratched) or calling the ambulance company instead of 911.
Originally I was admitted to the ICU before being transferred to the Stepdown Unit where a case manager came in to talk to me and asked me about what was going on with me at the nursing home. She was suspicious because it wasn’t the first time I’d ended up sick in the hospital due to Jillian stopping critical IV fluids. I told her the story as gently as possible not wanting to overdo it and tell the whole truth which was so crazy people wouldn’t believe it.
The case manager explained to me that the health care proxy couldn’t have been invoked on the grounds that I was mentally incapable of making my own decisions unless a mental health professional had signed off on it. i was 95% sure that no mental health professional had never signed off on it.
I stayed at the hospital for a few more days. My labs and heart were stabilizing nicely as they figured out the exact right mixture of meds and IV fluids I needed to keep everything working smoothly. Because my nausea was so intense they got rid of the water boluses and dropped my feed rate down to 30 ml an hour. It wasn’t ideal but otherwise, I had severe nausea, reflux, too much bile in my G tube drainage, vomiting, and diarrhea, all of which was causing me to lose too much fluid and electrolytes so the hospitalists said the higher rate was counterproductive in the end and that we would be better off lowering the rate slightly to a rate I could tolerate so that I could actually retain some of the nutrition that was infused into me.
The case manager was able to get in touch with Mass General’s Nerve Injury Unit and got me an emergency appointment for the following week. I was quite relieved to hear this. Finally, a doctor that I knew I could trust and that knew me, was going to meet with me to take care of me.
The day I was supposed to discharge from the hospital, the case manager came in around 10 AM, her usual time that she came in to talk to me every morning.
“Are you nervous to go back?” She asked me.
I’d been at BMC for a week and was much happier there than I’d been at the nursing home.
“Yeah,” I admitted. I had no idea what to expect. I knew that the case manager had been in touch with Jillian and everyone else at Hell-crest commons, I knew the case manager had given Jillian some ground rules that she had to go by, but I didn’t know exactly how much clout the case manager and the hospital had over Jillian and whether or not all we had done was tease the sleeping beast into an irritated rage or put her in her place, so yes, I was terrified.
“If she tries to stop your IV fluids again, you need to just call me,” the case manager said, and gave me a card with her number on it.
When I got back to the nursing home they wheeled me into my room on the stretcher, put me on my bed, and took me off the IV and tube feeding pumps from the ambulance and I almost held my breath to see what they would do.
First, they put me on the tube feeding pump.
I waited to see what number they would set it at.
They set it at 30 ml per hour, I was relieved, but still didn’t let my breath out.
Then they put me on the IV pump. I didn’t dare breathe until I saw whether they kept the rate at 1.25 Liters a day, dropped it, or upped it. The nurse fumbled around with her fingers on the pump for a moment. She pressed a few buttons. I couldn’t see what she was doing until she stepped away. When she stepped away I had been holding my breath so long I was seeing stars.
She had upped the rate so it would give me 2 Liters in a day.
Air whooshed out of me in a long sigh I was so relieved. I sent out a quick prayer of thanks to God, the case manager, Jillian, whoever, and then laid back in the bed finally able to relax.
In the week waiting for my appointment at the Nerve Injury Clinic things went pretty smoothly. Jillian actually kept my IV fluids at 2 Liters without really mentioning decreasing them. She kept my J tube feeds at 30 ml per hour as well too without mentioning increasing those either and informed me that every Monday and Thursday I would be getting labs drawn through my port and that she would personally inform me of my lab results and whether we needed to make any changes in my IV fluids as far as electrolyte composition or dextrose amounts.
Although she never apologized for almost killing me, I could tell she at least partially knew that she had seriously screwed up. Her whole demeanor towards me had changed, she was much more professional towards me and somehow a little more gentle as well too.
Even though she was treating me better and no longer bound and determined to kill me in her efforts to cure me, I still was hellbent on getting that health care proxy revoked. At that point, it was mostly the principle of the matter, but also that I didn’t want to risk any slip-ups on Jillian’s part putting me in any more dangerous situations where I didn’t have control.
“Can I speak to the psychiatric nurse practitioner again?” I asked her one day toward the end of the week before my appointment at Mass General.
“Sure,” she told me.
On Friday the psychiatric nurse practioner dropped by my room at the end of the day. I had been holed up in bed working on a writing project for school (I was finishing up my last few classes online to get my bachelor’s degree in professional writing studies that I had decided to pursue once it became obvious nursing was off of the table). She had taken so long to come find me that I had pretty much given up on her, so I was pleasantly surprised when she tapped on my shoulder and pulled me out of writing mode.
“You wanted to see me?” she asked.
I jerked slightly and then straightened up.
“Yes, I had some questions for you.” I explained.
“Sure,” she said.
“Did you tell Jillian that you think I’m mentally incompetent?” I asked.
“Did I what?” she asked, taken aback.
“Did you tell Jillian or the court that you think I’m mentally incompetent?” I repeated.
“Definitely not,” she immediately responded, “Why are you even asking something like that?”
“Well because Jillian invoked my health care proxy on the grounds that I am mentally incompetent, but I’m being told by multiple resources like the ombudsman, a case manager at BMC, and my own online research, that the only way a health care proxy can be invoked on those grounds is if a licensed mental health professional does an evaluation and agrees and documents that the person is mentally incompetent to make decisions for themselves. Do you think that I’m mentally incompetent?” I asked her.
“You are competent enough to be able to make your own health care decisions in my opinion as your licensed mental health provider.” She said. “The health care proxy is not valid, I would have had to sign off on it. I will bring that up with Jillian today before she has a chance to leave.”
At least now the pieces were falling into the right place.