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 on them, holding them down.
As if that wasn’t bad enough, Jillian who was my primary provider at the nursing home had no concept of what my disease was. she was convinced it wasn’t what I was making it out to be. She was on a mission to get me off IV fluids even though the IV fluids with electrolytes, which were the number one treatment for the dysautonomia part of my disorder. I needed large volumes of them to stay alive and keep my blood pressure up, heart rate down, and electrolytes stable. Over and over I tried to explain this to Jillian. as well. This included explaining to her that I couldn’t tolerate a tube feed rate higher than 40 ml an hour without refluxing tube feed back up from my intestine into my stomach and then having it just drain into my G tube. If it didn’t drain into my G tube I would vomit it up. it would also give me non-stop massive amounts of diarrhea kind of similar o the kind you get from a coloscopy prep. Jillian just wouldn’t listen and she wouldn’t even reach out to my outpatient doctors either.
At the beginning of the week she made a big show of coming in my room and lowering the rate on the IV pump.
Throughout the rest of the week running my fluids at a lower rate so that I was only getting 1.75 L of fluid a day I was already noticing major differences. My mouth was getting so dry that my lips were starting to stick to my teeth and they were cracking and bleeding and peeling. The skin in my mouth, my lips, and on my tongue was so dry that it was like it was shedding papery, sticky, skin cells. It was also cotton dry and salty. The skin on my body was slightly red and flushed and starting to peel everywhere. My heart had started to race and quiver. I had pins and needles in my fingertips and face, a symptom I by then knew to recognize as low potassium, but when I asked Jillian if she could check my electrolytes, potassium included, more often than weekly, because I was concerned it was low, she told me I was projecting symptoms onto myself and would cause it to become low like that.
Jillian did, however, start testing my blood sugars every six hours, and when they were coming back low because I was no longer getting as much dextrose in my IV fluids due to getting less overall IV fluids. when she saw the consistently low blood sugars she insisted I needed my tube feeding rate increased.
In one day she increased it from 40 ml per hour to 55 ml per hour. She didn’t tell me that she’d increased it, I think she thought that because all of the nausea and vomiting was “in my head” and if I didn’t know the rate had been increased then she’d be able to bump me up to a healthier higher rate without me having any of the symptoms I’d warned her about. I’d get all of the benefits of more nutrition and better blood sugars and wouldn’t know any better.
The nurse told me about the rate increase after a morning of profuse projectile vomiting. I spent the entirety of that day puking and dry heaving so much tube feed and bile that the nurse paged Jillian.
“You need to stop making yourself vomit up your tube feed,” Jillian told me. “You’re way too underweight as it is. I know you probably think you’re fat because of your eating disorder and everything, but you’re extremely underweight and now your blood sugar is being affected and it’s just quite unsafe. I don’t know what else to tell you.”
I just about lost it on her.
“I’m not doing anything to make myself vomit!” I told her. “IIt’s kind of impossible to make yourself vomit from your small instestine. My body just can’t handle the higher rate so its refluxing the tube feed back up into my stomach and that’s what’s making me puke. I don’t have an eating disorder. I don’t want to look like this. I hate looking like this. This isn’t fun for me, this isn’t a game for me, I simply am way too nauseous, I physically can’t stop puking!”
Just then I retched and vomited all over the floor while trying to grab the basin I had been using for a puke bucket.
Carl, one of the unit managers that I had a special connection with because he had researched my conditions in nursing journals and understood what was going on in my body, was walking by. He overheard me yelling at Jillian, and poked his head in.
“She really can’t control the vomiting,” Carl told Jillian, “I’ve been watching her all day, even when she was resting earlier she was woken up by bouts of uncontrollable vomiting. The rate’s too high, she can’t handle it. She’s right about it refluxing back up into her stomach. She wouldn’t be able to throw up something that’s in the middle of her intestine otherwise.”
Jillian sighed, looked at me, looked at Carl, sighed again.
“All right, I’ll go back down on the rate, but we’ll have to monitor your blood sugars every four hours instead of every six to make sure that you don’t get too low and we’ll have to have you get an order for glucose gel to put in your mouth if it does go too low.” She decided. Before spinning on her heel and walking away without ever apologizing for accusing me of forcing myself to vomit or having an eating disorder.
Even with my tube feeding rate turned back down to 40 ml per hour, I was still so nauseous all of the time that I barely ever got out of bed anymore. If I moved too much, my stomach sloshed around and then I started with the projectile vomiting. Jillian had started giving me those extra bolus flushes of water to replace what she had taken away in IV fluids, and my GI tract was just not having it.
Another weird symptom I was noticing was that ever since I started getting more water boluses through the J tube, my G tube drainage was putting out way more bile. I was putting out at least 3 liters of bile a day. Whatever extra fluid Jillian had hoped to give me through the water boluses was getting drained out plus a million times more fluid through my G tube simply because my GI tract was just too shut down to process anything more than 40 ml an hour through my J tube.
What Jillian had not bothered to learn, was that you really can’t bolus feed through a J tube like you can through a G tube. A G tube ends in the stomach and the stomach can expand to accommodate a bolus. A J tube ends in the jejunum which is the middle part of the small intestine which is like a little tube that can’t expand to accommodate a bolus. Bolusing too much fluid through a J tube can cause the intestine to rupture which is a severe medical emergency that can easily become lethal.
Pretty much all of Jillian’s other tube-fed patients had G tubes, GJ tubes are much less common. Once again Jillian refused to recognize that I was not your run-of-the-mill nursing home/rehab patient. I was a very rare and complex medical anomaly instead. In all of the 14.85 million people in the population making up New England, there are five other patients with Autoimmune Small-Fiber Autonomic Polyneuropathy. We are all followed by the Complex Care team at Massachusetts General Hospital.
No matter how many times I tried to explain to Jillian that you can’t bolus through a J port of a GJ, and showed her articles that I found online backing me up, she refused to go back down on the water boluses stating that my labs were already coming back showing severe dehydration. I just shook my head at that comment.
My doctors did call me back and they were mostly sympathetic but said that unless Jillian called them directly, their hands were tied.
“You’re under Jillian’s care now. You can have her make an appointment for you to see me, you can have her call me, but if she’s not willing to reach out to me there is nothing I can do to help. It would be overstepping my boundaries.” explained Dr. Green.
“She’s literally going to kill me,” I explained. “She’s reducing all of my IV fluids and is planning on stopping them and then stopping my tube feeds.”
“Well, she obviously won’t be able to do that, she’ll see in your labs that your body won’t withstand that and she’ll have to restart them.” Dr. Green tried to reassure me.
“You don’t understand, she’s like insane, she thinks I fake labs because I want to be sick. She’ll stop them anyway. She is literally going to kill me.” I told her.
“Well I think you’re overreacting a little bit,” Dr. Green said. “I can’t do anything my hands are tied. Just try to get her to call me and I’ll explain things to her. I got to go now, bye.” Dr. Green hung up the phone.
The other phone calls with my other doctors went somewhat similarly. No one wanted to even begin to fathom how insane Jillian and this whole situation was and I seemed like the crazy one. We went into the second week of the decrease in IV fluids. I was now only getting 1.5 L of IV fluids a day. My heart was racing. When they took my vitals my heart rate was routinely in the 140s and that was normal for me. My blood pressure was routinely in the 80s/40s range. Jillian was hesitant to give me my liquid Dilaudid through my J tube for my neuropathy, interstitial cystitis, joint pain, muscle pain, bone pain, headaches, bladder pain from my cystitis, general inflammation, and severe granulation tissue around my GJ tube site because my blood pressure was so low but finally caved. The tingling in my fingertips and face had gotten way worse. A signal to me that my potassium was dropping into a dangerous low. I wasn’t surprised when Jillian approached me about it.
“Your potassium is super low, are you refusing the oral potassium supplements that I’m prescribing you to take through your J tube?” Jillian asked me in the middle of the second week of the decrease.
“No, I’m taking them,” I told her, biting back an ‘I told you so’. I had warned her that oral potassium through my J tube didn’t work.
“So you’re taking potassium through your J tube three times a day?” she asked me again.
“Yes,” I repeated. “You can ask the nurses, you can check the med book logs. Remember I explained to you before you started decreasing my IV fluids, that I don’t absorb oral potassium through my J tube because of my malabsorption issues and my kidney issues? This is what I was talking about. The only way I can absorb potassium is intravenously. All the liquid potassium or potassium pills do is make me stomach burn really bad when I get them pushed througjh and a few hours later, and they make me super nauseous to the point where I feel on the verge of vomiting and I dry heave after I take them for a good couple of hours. The nausea lasts about three or four hours. I have been taking them though. They just never do anything but make me miserable.”
Jillian just kind of looked at me for a long second sniffed hard and walked away.
The ombudsman finally called me back the day before we were set to decrease the IV fluids again.
“I can come down there in two weeks,” he told me. “It’s the earliest I can come down.”
“At the rate we’re going at, I don’t know if I’ll still be alive in two weeks,” I told him honestly.
“What’s going on exactly?” he asked me.
I explained the situation to him.
Like everyone else he wanted to assume that a health care professional would never in a million years just let someone get into the exact situation that Jillian had put me into, and he wanted to trust that I would be okay for two more weeks until he got there because Jillian would never let anything that terrible happen to me.
He did however let me know that to have invoked my health care proxy on the grounds that I was mentally incompetent, Jillian had to have gotten a statement from some sort of psychiatrist or psychologist. If she hadn’t then the proxy wasn’t legally invoked and I was still the one responsible for all decisions involving my medical care.
“I will investigate further when I come down in two weeks,” he promised.
I thanked him but wasn’t totally reassured as I was very unsure whether I would live that long with Jillian managing my care.
The following day I could tell that my potassium was still rapidly dropping and we had done nothing to rectify it. My blood pressure was so low I could have tripped on it, I was needing glucose gel often because my blood sugar was dropping so low so frequently. Even though I was showing multiple clinical signs of dehydration, Jillian lowered my IV fluids again so that I was now only getting 1.25 L a day of my sugar water with potassium, sodium, and other electrolytes.
I lasted three days like that, which was longer than I personally thought I was going to last. On the third day, my heart started feeling like it was fluttering in my throat. This was a symptom that I immediately recognized as an emergency cardiac symptom. I knew I needed to get help. It didn’t help that I was starting to get a little scared because I knew I only had a small window of time to get emergency medical care before it was too late. The caffeinated butterfly in my throat feeling brought me back to the code blue day when I had been playing cards with my mom and kept going into V-tach.
I had to find a nurse that would get me sent out to the hospital immediately without contacting Jillian first. So it had to be an experienced smart nurse that wasn’t in tight with Jillian. For the first time in days, I transferred myself into my wheelchair and went out to the day area to see what nurses were at the nurses’ station.
The room tilted and swirled around me as I transferred and my heart pounded super hard in both my chest and my throat. Relief swished through me when my butt landed in the wheelchair.
Once I was in the day area and at the nurses’ station I looked around, I saw Carl and immediately knew he was the one I was going to approach.
“I think I’m having a cardiac issue,” I told him.
Luckily Carl was one of the Unit Manager nurses who took me seriously and didn’t brush me off as a psych patient like Jillian and her followers.
He grabbed a stethoscope and took a listen.
“Yeah, you’re in some sort of weird abnormal rapid rhythm.” He said. Then he grabbed a blood pressure machine to take my vitals. My blood pressure was 72/34, my heart rate was bouncing around everywhere but was somewhere around 190, and my oxygen level was only 84%. He immediately threw my oxygen on me and told me he was dialing 911 to get me to the hospital.
My eyes went wide because normally nursing homes dial the ambulance companies or hospitals directly to arrange for an ambulance to come to bring someone to the hospital, but they don’t normally use the 911 system at all.
I had an even stronger feeling by now that I was in V-tach from low potassium and if that was the case they had to get there quickly, so I was really glad that he had dialed 911.
Once Carl got off the phone he turned to me.
“I want you to focus on taking nice deep breaths and trying to relax,” he told me. “The ambulance is on the way. They’re going to get you to the hospital, you’re going to be ok.” As he spoke he grabbed the blood sugar monitor and checked my blood sugar, it was 52.
“I’m going to give you some glucose gel to put on your tongue to get your blood sugar up, just keep taking nice deep breaths, focus on your bunny Buttercup. Give her a hug.”
He handed me the glucose gel. I smeared some of it on my tongue and breathed in the oxygen as deeply as I could while hugging Buttercup. In my opinion, you’re never too old for Build-a-bear.
“I’m going to have to call Jillian and give her an update about what’s going on, but I’m going to wait until after they take you to the hospital,” Carl explained to me. Smart man.
Ron kept me calm and stable until the ambulance arrived a few minutes later.
Ron told them I had something cardiac going on and gave them my vital signs and they also rechecked me and then put me on the monitor before doing anything else.
“She’s in V-tach!” one of the paramedics said as soon as they got me on the monitor.
“It’s her potassium,” Carl explained.
“My potassium has been dangerously low for over a week,” I explained through my too rapid breathing. “My provider has been trying to cut back my necessary IV fluids that have a lot of potassium in them. I can’t retain any other forms of potassium,.”
“We have to get you to the hospital as fast as possible,” one of the paramedics explained to me as the two of them lifted me out of my wheelchair and transferred my feeding pump and bag and my IV pump and bag over to their IV pole on the stretcher. I held onto my G tube drainage bag so that it didn’t get pulled on.
“We’re going to turn up your oxygen,” the other paramedic told me as they began running with me down the hall toward the elevator. The heart monitor was screaming out an alarm. I could read the worry in the paramedic’s faces. As soon as we got in the ambulance, the paramedic that had climbed in back with me shouted up to the driver to take us right away priority one; lights and sirens. I was feeling a dark blackness trying to pull me under. The temptation to fall into the dark sleepiness was strong, but I was scared, really scared, that if I did I would never wake up.
There was really no one in my life that I could think of to say, ‘I need to stay alive for them because they would be devastated if something happened to me’, but I knew I wasn’t ready to leave this world. There was too much writing I wanted to share with the world, too much I had to say, too many teddy bears to cuddle, too many new friends to make, too many new things to experience, too many new books to read, I just knew I wasn’t ready to go. So I fought hard, I didn’t let myself slide into the blackness, I didn’t let myself go to sleep. I focused on the noises around me, the sirens, the paramedics talking, the radio crackling, I tried to keep my eyes open even though they kept melting shut.
“You’re breathing is getting very crappy,” the paramedic was saying to me.
I tried to speak, but I don’t think I managed it.
“Can you try to take some really deep breaths in through your nose and out through your mouth, breathe in that oxygen, okay?”
I tried to nod to acknowledge him, but again, I’m not sure if I was successful.
The paramedic replaced my nasal cannula with an oxygen mask.
A few minutes passed.
There was so much noise and so many alarms going off from the monitor.
“I don’t want to fully intubate you, but I am going to insert a nasal airway,” the paramedic told me.
I didn’t like the way that sounded, but all I desperately wanted was to stay alive.
He tilted my head back really far and I felt the sensation similar to a giant NG tube being inserted into my nose, I felt like I was gagging on it and choking on it and my throat hurt like it had a giant object scraping the back of it, which it pretty much did. Then he hooked up oxygen directly to the nasal airway.
When we arrived at the hospital I was rushed right into Trauma One where a whole bunch of people were waiting for me. They slid me onto the bed and hooked me up to their monitors. They cut my T-shirt and Minnie mouse leggings right off of me and haphazardly covered me with a hospital gown. They put the pacer pads from the heart monitor on me, one on my chest and one on my back, explaining to me that it was just in case. They hung IV bags wrapped in pressure bags to make them pour the IV fluids in as fast as possible. They drew a whole bunch of vials of blood as well as blood cultures. One of the nurses inserted a Foley catheter into me.
One of the doctors was able to understand that I was trying to explain to him about my potassium. At that point, I was so out of it that I could barely speak. I knew if he called the nursing home the true story of what was going on would probably never be communicated to him. I also knew that I needed potassium as soon as possible because I was in V-tach from my levels being so low and that the next step was V-fib and then death.
It took everything I had in me to put together a few words and speak to the doctor.
“My potassium is very very low,” My words echoed in my ears in a very strange way from having the nasal airway in my nose.
I was very lucky to have a doctor that believed me without needing labs to back me up. I would have died waiting for labs. He immediately ordered a bolus of potassium and then more electrolytes and fluids.
Once my potassium was being stabilized the cardiac symptoms began stabilizing as well. My heart took a while to stop pounding though. Thanks to Jillian I had been minutes, if not seconds from death. This stuff was getting way too serious.
They decided to admit me to the hospital that evening once I’d been stabilized in the ER.