So I had my Rituxan infusion on Friday, and spent most of Saturday feeling okay. I wasn’t loving life, but I wasn’t as miserable as I thought I might be. In fact, I was even able to walk the dog a couple blocks that night and visit the guy. (It was only fair since I basically raided the local supermarket’s entire stock of Italian ice, and he spent the entire day with me the day before at the infusion center.) When I woke up on Sunday, though, things were not good.
First off, I woke up at 1pm. Which, I’d been up till almost 4am with the cold sweats and cramps, so it wasn’t too much of an oversleeping situation, but still. My body was heavy and I just felt like I had the flu. I decided to hang low, which is what I did, but I started noticing a disturbing symptom taking over my body. The aching in my muscles gave way to a tingling session that started in my face and moved along the outside of my body. As it progressed down my legs, it combined with my exhaustion, and sore muscles, and left me unable to really even support myself standing. Now I was worried. The pins and needles were making things like typing a text, impossible, and I couldn’t really even get myself out of a chair to make it into a Lyft or Uber. I ended up having my complex security call 911, where the ER doctors were perplexed by my symptoms. As weak as I was, it was a weird sort of weakness stemming from my muscles spasming when I tried to use them. My reflexes were extremely hyper-reflexive.
I got transferred to the Naval hospital, a place I despise, but tried to stay up beat. I needed an MRI, which I couldn’t get until the next day, and I couldn’t walk. I wasn’t going home, and I wasn’t going to be allowed to hang out in the ER. I had to be admitted, which unfortunately for me means going to the shitty military hospital here. I was admitted around 1:30am, but still saw two doctors and many nurses. I stressed the importance of my medications, particularly the seizure and nausea meds. I also indicated I couldn’t sleep without sleeping medication at home, so I’d need something to help me sleep there in the hospital. I was told I’d get all meds at my usual times, and I reiterated I was only concerned because in the past I haven’t gotten my meds from that facility.
By 3:30, I’d received no medications. I pushed the call button and a nurse came in with a blanket, and I asked about my medications. He logs into the computer and tells me the doctor only ordered three of my drugs, none for sleep, and that all the medications were put in for 9am. I was already 2.5 hours passed my schedule time for my Keppra, my main seizure drug, and it had been well over 24 hours since my last dose of Neurontin, something that also prevents seizures, but ironically can also cure the symptoms I was admitted for.
Yes, you read that correctly. I was admitted for suspected peripheral neuropathy, potentially relating to Behcet’s, or the Rituxan, and they knew giving me my NORMAL medication would ease the symptoms if they were correct, but wanted to wait several hours.
I had to argue with the nurse, and several corpsman regarding the importance of not missing seizure medications. I couldn’t believe I was having this conversation! I was sleep deprived, sick due to dehydration, and now unmedicated. How could they not realize the danger in this situations? By 4am I was given my three medications, but nothing for sleep. When I asked a nurse who came in with something for me at 4:30 if it was to help me sleep he said yes, but then informed me it was a heartburn medication. Knowing not sleeping, and missing a bunch of my meds meant I was still at high risk for seizing, I started to test out may painful feet. I could move now, I was just weak. I started to demand to leave.
It took four hours from the moment I declared my intent to leave against medical advice, to actually be allowed to walk out of the facility. I had an IV in place, but had received NO fluids. In fact, the damn thing hadn’t been flushed once since placement in the civilian ER, where I had been mercifully given some fluids. I wasn’t even on monitors at the naval medical center, despite their concerns that my weakness could move from peripheral neuropathy into something more central.
Yeah, one of the reasons they tried to talk me into staying was the concern that this could spread. I had to point out at home I had friends, a roommate, and a service dog, whereas at the hospital I had nothing, and wasn’t even on a monitor. Better yet was the doctor telling me my vitals had been stable through the night, when nobody had done a check until I started insisting I wanted to leave around 4am.
I was bullied, strong armed, and treated like garbage. One nurse tried to make me feel thankful for the free medical care, citing her son having to pay $240 just to be seen in a civilian ER with his non-military insurance. I looked her straight in the face and said I would gladly pay if it meant I’d be cared for. All I’d done was worsen my condition by coming into their hospital. They lied about my discharge vitals, ignoring my 185/90 blood pressure, instead doing repeat manuals, and arbitrarily assigning something around 146/62 as my official number. I never have blood pressure that low, especially without sleep or blood pressure medication. I’d also been crying for over an hour.
When I finally got up to go I was exhausted and had some trouble walking. Noticing a day shift nurse went to get a wheel chair, and the nurse who tried to make me thankful for my free care, cattily goes, “Leave her, she wanted to go, she can go.”
I cried all the way home in the cab, and I’m still shaken. I know it’ll take a couple days for my sleep pattern to regulate, and I have to be extra careful now about seizures. I’m livid that I wasn’t allowed to leave despite the severity of my neglect, and the fact that they were not providing me with any care. Worse, I could have done more for myself at home. Even their attempts to feed me were miserable. I informed upon intake I was on a restricted diet, but received a breakfast I couldn’t even eat if I tried. I was made to feel like it was my fault, that I was crazy and irrational, and being overdramatic. Like I wanted to leave simply because I hadn’t received all of my usual meds.
When you have a complicated medical history, and you’re on a specific regimen, it’s critical to stick to it. Failing to do so can be seriously catastrophic. The negligence was one thing, but their cruelty in its execution defied all fathomable rationale.
I’m working on a formal complaint, but its scary that this is my only option when it comes to being admitted. I actually plan on talking with my insurance company to see what can be done. If I have to threaten to sue, at this point it’s worth it. They falsified records, in front of me, and even took vitals once I’d been discharged. I was poked by incompetent corpsman who had zero regards for safety or sanitary conditions. The whole thing left me shaken, and got worse when the guy was frustrated that I’d pushed to be discharged without the imaging study. He just can’t understand what those of us who have been in this hospital know: it’s not safe.
A friend was there, and had become hysterical for the same reasons. Not receiving medications, etc. When she got anxious, and her blood pressure went up, they decided she was emotionally unstable and held her for 72 hours. Thankfully she told me because I nearly met the same fate. She said she’s repeatedly had to remove her own IV and just leave, because they won’t discharge you, or let you sign out AMA, they always have an excuse.
We’ll see if the complaint goes anywhere. They’ve almost killed me in the past, so I doubt this will do much, but it’s unacceptable. I felt intimidated, like I wasn’t allowed to leave. 4 men, in uniform, to backup one doctor, a nurse, and a social worker? That’s not necessary. I wasn’t being psychotic I was just insistent on leaving.
Now I feel like this sick waste of space when it comes to those around me. I haven’t done dishes or cleaned the apartment so I feel bad. Then there is the fact I worried the guy and several other friends by dropping of the map when I couldn’t feel my hands and feet. I keep telling myself it’ll get better, but it’s so hard to deal with when things like this happen.