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.
I tried to talk to the paramedic, that was sitting in the back with me, the whole time to distract myself. Unfortunately, I couldn’t distract myself. I had this nagging feeling that my world was about to start dissolving around me.
As soon as we got there I knew I hadn’t been too far off.
It was nighttime when we arrived. About seven or eight o clock at night, but from the outside, the facility looked nice. The lobby looked nice too but the lighting was low, the air was thick with the overpowering scent of floral air freshener covering up something else you didn’t want to be smelling, and the receptionist didn’t even look at me.
“Is this Rebecca Pava? She’s going to Unit 4, the second floor, take a right off the elevators check in with one of the nurses.”
I felt like I was being treated like an object, not a person.
We got in the elevator went up to the second floor and as soon as we got off…wham! We were hit in the face with a wall of scent of human feces and urine. All the floral air freshener in the world couldn’t cover that stench up. I was gagging as we got closer to the nurses’ station. A nurse came out and greeted us and told us she was going to show us my room. At least this employee acknowledged me as a person.
My room was dark and my roommate had the entire room decorated with her stuff. At first, I was frustrated that my space had been encroached on, but then I saw my roommate laying there and she had a hole in her throat with a breathing tube coming out and she was hooked up to a ventilator. An IV pole stood guard by her bed hosting a bag of tube feed and a feeding tube pump hooked up to either a G tube or GJ tube. She looked like she had Down syndrome too, my heart ached for her. I figured I didn’t care if she took over the entire floor to ceiling with decorations that staff or her family put there, I would help them do it if I could.
“That’s your roommate Jenny,” the nurse told me. She’s 42 and has Down syndrome, she can’t talk because of the vent but she’s one of the happiest people I know. She loves to color and she loves Hello Kitty. She will love your blanket, you could show it to her when she wakes up.”
“I definitely will!” I told the nurse getting excited about making Jenny happy.
“How well do you stand and transfer?” the nurse asked me.
“I can’t,” I told her.
“Well, we can’t even let you try anyway until you have a physical therapy evaluation,” She explained to me. “So I will have these two gentlemen just lift you into bed. I have to search around a little bit for our IV pump so we’ll have to pause your fluids temporarily so these guys can take their pump back. We’ll hang on to the IV bag, and as soon as I find a free IV pump we’ll resume your fluids. I also have to locate a feeding tube pump so in the meantime we’ll just use your one from home.”
I couldn’t help wondering why, if they had known for two days that I was being transferred there, had they not already reserved me an IV pump and a feeding pump. In the interest of keeping the peace, I didn’t voice this opinion. The last thing I wanted to do was to be labeled as a problem patient within minutes of arriving. Most medical staff didn’t appreciate patients who advocated for themselves or had knowledge of how the medical system worked or should work.
The nurse and the paramedics put me in bed, and I was starting to not only have a sinking feeling about things, but I was also starting to feel a little panicky about what I had gotten myself into.
Once I was settled into bed the nurses asked me a whole bunch of questions about all of my tubes and lines and everything and then they explained to me that Jillian, the nurse practitioner who would be in charge of my care, would be coming down to see me. They kept telling me how nice she was, how smart she was, how fabulous she was. They said that she would be in charge of ordering all of my medicines.
“I took all of my afternoon medicines before I left the hospital, but I usually take all of my nighttime medications around 8 PM, did the hospital send you over a med list?” I asked. Med lists notoriously get screwed up in transit, or even change of shift in an ER, but I always have an accurate, up-to-date med list on my phone.
“I’m sure we got a copy of your med list but Jillian will be ordering all your meds and I don’t have anything to do with that. Also for tonight and tomorrow, you may not be getting certain medications because certain ones we have to special order if no one else in our facility is on them, and our pharmacy is located an hour away in Springfield and they have to make them up and deliver them.”
Suddenly I could feel all my hair all over my body stand up straight. Due to my fragile medical condition, missing certain meds could have dire consequences, possibly even deadly.
“Which ones?” I asked, unable to keep the alarm out of my tone.
“I don’t know yet, we’ll know more when you meet with Jillian and she goes to order them and we look at what we have in stock.
My chest burned. I could feel my heartbeat in my ears, my head ached. What in the world had I gotten myself into?
Jillian came in like a bowling ball at full speed. Her probing questions were demanding and she acted like I wasn’t making sense and she didn’t trust me. It was my first taste of Berkshire Health Systems and I wanted to spit it right out, rinse my mouth out, and gulp down a chaser.
“So you say you have this Small Fiber Autonomic Polyneuropathy and that’s causing such bad gastroparesis that you can’t eat anything at all and need tube feeding and also IV infusions at the same time?” She asked me.
“The Small Fiber Autonomic Polyneuropathy causes severe gastroparesis, esophageal dysmotility, intestinal dysmotility, colonic inertia, malabsorption, gastritis, colitis, a neurogenic bladder, POTS, orthostatic hypotension, iron deficiency anemia, anemia of chronic disease, seizures, scarring on the lungs from atelectasis, diaphragmatic weakness, kidney dysfunction causing hypokalemia, SVT, A-fib, body-wide neuropathy, chronically dilated pupils, hypothyroid, temperature instability, and more. It’s a whopper of a disease and there are not many good treatment options out there for it. I also have diabetes insipidus that I’m on injections of Desmopressin for, and a history of a Cushing brain tumor that got removed in 2012, and a history of a brain bleed in 2013.” I explained.
“Who told you all that?” she asked.
“All of my doctors, like the complex care team at Mass General and Dr. Hurrowitz, my neurologist from the nerve injury clinic at Mass General. He’s an expert when it comes to Autonomic SFN.” I told her.
“I know plenty of patients with SFN and none of them are on tube feedings, IV fluids, catheters, oxygen, and bedbound because of it, and they certainly don’t have the laundry list of conditions you just rattled off.”
“I have Small Fiber Autonomic Polyneuropathy so it’s different than regular SFN,” I tried to explain. My SFN causes autonomic neuropathy and affects all of the nerves in my body, not just a few here or there.” I explained. “It causes a shutdown of the unconscious nervous system pretty much. Anything that the unconscious nervous system is supposed to regulate doesn’t get regulated normally in me, so that’s like heart rate, blood pressure, digestion, urination, breathing, sweating, pupil dilation, all of that.”
“So is that kind of like autonomic dysreflexia? Do you have a spinal cord injury?”
“No, it’s different,”
“Why do you need the IV fluids? Can we just D/C those? Your nurse finally found a pump but I’d rather just D/C the fluids and give you bolus flushes of free water through your J tube. It’s less invasive and lowers the infection risk for you too.” She bulldozed only half-listening to me.
“I can’t really tolerate the 40 ml an hour that I’m at now. That’s why I’m nauseous all the time and feel so bloated and vomit so frequently. My meds have to be pushed so slow or I puke them back up even though they go in through my J tube. There’s no way in hell I would tolerate anymore anything through that J tube. Plus with my autonomic neuropathy, which is a form of dysautonomia, I need way more fluid than most people need to keep my body functioning properly and my vital signs stable. Increased fluids and sodium is the number one treatment for dysautonomia. I also have increased fluid needs due to my diabetes insipidus. I put out about 5 to 6 Liters of urine a day.”
There’s no way you could actually put out that much urine a day. I looked at what they were giving you at the hospital and you were only getting in about 3 Liters of liquid a day. How could you possibly put out 5 to 6 liters a day?”
“I don’t know, but I was. I have both central and nephrogenic diabetes insipidus. The nurses at my local hospital kept track of it, you could probably find it in my records from there.”
“Well, I certainly don’t feel believe that.’
I felt a coil tighten in my stomach.
“Well, we will see what we can do for you. I think we can help you a lot. I think we can turn your life around and put you back on track.”
The coil tightened further, I wasn’t reassured. I knew this was false hope she was offering me, She obviously wasn’t listening to me and didn’t understand.
“I want to get you off as many of these meds as we can because I think you’re on way too many meds. I want to try to up your rate on the tube feed and help you get up to a healthy weight, I want to see if we can get you completely off the IV fluids and even tube feeds, and get you to a much better place healthwise. I strongly feel it’s possible
All my alarm bells were going off at full power in my head. All I wanted to do was jump out of bed and run far far away. To the outsider, it might have seemed like a message of hope, but knowing what the real experts had to say, and how my body felt, I knew better.