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.
The first couple of days in the ICU were a blur. I was very happy when they transferred me from the ICU to the stepdown unit which was like a step in between the ICU and the telemetry floor. On the step-down unit, I was more alert and very relieved when they sent a nurse case manager in to speak with me about my care.
“Your hospitalists here, and I are concerned about the fact that your provider at the nursing home allowed your potassium to get so low that it caused heart rhythm issues so severe that you almost died. That’s not even mentioning the other electrolyte levels that were all out of whack, the low blood sugars, and the severe dehydration. You were also admitted to the emergency room three weeks ago where you had very low potassium, low magnesium, low phosphate, low blood sugars, and severe dehydration. What’s confusing us is why it’s documented that you were on a higher rate and higher volume of IV fluids three weeks ago than you are now, when even three weeks ago you were having trouble maintaining your levels even at those higher rates. We also still don’t understand why your provider at the nursing home stopped your infusions before sending you to the ER three weeks ago. We’re going to be calling her to find out what exactly her story is, but we are also curious if you can describe to us any reasons you know of.”
I was caught so off guard by the question from the case manager, that for a second I just froze in space, not moving anything, forgetting to even breathe. Finally, I reminded myself to inhale the oxygen through the nasal cannula in my nose, and then slowly exhale to stop the ding of the low oxygen alarm from the heart monitor.
I knew I had to tread carefully. I couldn’t just come straight out and tell the whole story, the whole truth, like it had all unfolded because it was so crazy and unbelievably nuts and bizarre that no one would believe me and it would sound like I was making stuff up. So I took another long slow inhale through my nose and exhale through my mouth and began doing the best job I knew how to do to help save my own life from a situation that I knew would otherwise kill me. I knew this was a lifeline being thrown my way and I had one chance to catch it and reel myself to the safety raft but that I had to be careful because if I dropped the rope I may not get another chance.
“Jillian is my provider at the nursing home. She refuses to listen to anything I try to explain to her about my conditions.
I have a very rare and complex neurological condition that I am treated for through Mass General. I’m followed by the Nerve Injury clinic, and when I’m inpatient I’m followed by a special program called the Complex Care Team as well
I can give you their information so that you can reach out to them with any questions about my underlying conditions. They’re the ones who diagnosed me with my autoimmune small-fiber autonomic polyneuropathy and they are the top experts in the world on this particular condition.
In 2014 they placed my port-a-cath and GJ tube and started me on J tube feeds at 40 ml per hour and IV fluids with potassium and dextrose at 2-3 liters a day. The IV fluids are the number one treatment for the autonomic neuropathy part of my disease. I physically can’t take in more than 40 ml an hour through my J tube because of my severe gastroparesis. So the IV fluids provide my hydration as well as stabilize my electrolytes, and supplement my calorie intake.”
Jillian doesn’t understand about my conditions, she’s trying really hard to help me, but she doesn’t get the difference between regular everyday small fiber neuropathy that diabetics get in their feet from years of high blood sugars( that consists of annoying pins and needles sensation along with bothersome pains) and my disease that can begin in childhood and is severe and life-threatening and degenerative.
Because she doesn’t understand the difference and is trying to help me have a more normal life she’s trying to get me off of the IV fluids and replace them with J tube boluses of water. Every week she decreases my IV fluids by another 250 ml and adds another 250 ml worth of J tube water boluses that make me so incredibly nauseous I projectile vomit, can’t move without feeling like my stomach is sloshing, and put out liters and liters of fluid into my G tube drainage bag because the water refluxes back up out of my intestines into my stomach.
As she gets rid of more and more IV fluids my electrolyte and blood sugars are dropping lower and lower. I’m still getting the tube feed at 40 ml an hour, but due to my malabsorption issues, most of it is just going straight through me. It gets flushed right out with my chronic diarrhea or refluxes back up the G tube in the case of the fluid being given through the J tube. Plus my kidneys have an issue where they can’t retain potassium unless it’s being pumped through my veins at high amounts pretty much 24/7.” I explained to the case manager. “So with the decreased IV fluids, my potassium levels are dropping to dangerously low levels rapidly which is causing my dangerous heart issues”
“Have you told her you don’t want to decrease the IV fluids and want to go back up to the 2 Liters a day of them?” the case manager asked me. “Based on what’s been happening with your health the last three weeks, your lab results, and your EKGs, the doctors here don’t think it is safe for you to be on any less than 2 liters a day and I have to say, even though I’m not a doctor I do agree.”
“I’ve told her that, but she insists we have to eliminate the IV fluids and will not go back up on them no matter what I say,” I explained.
“That doesn’t make sense,” the case manager told me. “You need those IV fluids to survive, do you realize how close to death you were from her lowering your fluids to just 1.25 Liters a day?”
“I know I need them,” I explained to her. “I have argued with her until I’m blue in the face and she just doesn’t listen to me. She thinks my illnesses are all in my head and that I just like being sick. I told her I wanted to refuse the J tube water boluses because they make me so sick and she informed me that she had invoked my health care proxy on the grounds that I am incompetent to make my own health care decisions because my health care decisions have landed me in a nursing home at age 24 with multiple tubes in me.”
“Now that seems ridiculous,” the case manager said. “I’m sitting here talking to you and you seem perfectly competent. Just because you’re in a nursing home and have tubes in you, doesn’t mean your incompetent, it means your sick and that you need extra medical care due to an illness that is not your fault at all. I really hope you know that none of this is your fault at all. That’s important for you to know.”
It felt good to hear someone say that after all of these years of being told the opposite.
“The ombudsman that I spoke with on the phone briefly said that in order to legally invoke the health care proxy she needs a psychiatrist backing her up saying that I’m mentally incompetent. I did speak with a psychiatric nurse practitioner at the nursing home briefly but she said that my schizoaffective disorder is under very good control, most people wouldn’t even know I have it, and I’m just having normal reactions to stressful situations., so I highly doubt she’d sign off on a paper saying that I’m mentally incompetent.” I told the case manager.
“Definitely contact that psychiatric nurse practitioner and tell her what’s going on, if you can get her to contact the courts and explain to them that she doesn’t think you’re mentally incompetent than you can probably revoke the healthcare proxy.” Advised the case manager.
“There’s something funky going on here,” the case manager said. “I don’t feel comfortable with this situation, and neither do the hospitalists. We can’t send you back to the nursing home until we know that Jillian will do labs at least twice a week, bring you back up to 2 liters a day of your premixed IV fluids and titrate them to your labs, and get you in to see your specialists for regular appointments. She also needs to be communicating with these specialists. I will be the first one to tell her that if she is not communicating with these specialists and doing everything else I just described then she will be reported to the director of nursing at the nursing home as well as the ombudsmen and the Department of Public Health.
After the case manager left the room I felt like a weight that had been piling up on my shoulders for the last four months I’d been at the nursing home, was finally lifting off. There was a small opening of light winking at me like a star to wish on at the end of a long dark tunnel.
My first impulse was to call my mom and tell her the good news, but then I remembered that my mom had crossed over to the dark side, so instead, I picked up Buttercup, hugged her, and then went on my computer to write in my journal.
