In the next few days after my birthday party, I started seeing a pattern in Nan that was worrying. She began coming into work anywhere from fifteen minutes late to a whole hour late. This wasn’t good for me because my IV bags and my tube feeding bags would finish and begin alarming and I would be unable to reach the pumps from my hospital bed, even when I sat the bed all the way up. This meant that they would just keep alarming loudly, it would be enough to drive me nuts. I would also finish all of the drinks that whoever worked the night before had left at my bedside, so I would be really thirsty. Sometimes I would have used up all of the straight catheterization kits as well and would feel like my bladder was full but not have the means to drain it.
Luckily, so far she hadn’t made me late for any appointments but if I’d had any morning appointments, I would have been late for them.
“If this was any other job you would give her a warning or two and then if she kept showing up late you would fire her,” Jeff told me, frustrated that I wasn’t getting cared for properly. I had ended up calling him over and verbally walking him through the steps to change over my IV bags and my tube feeding bags several times that she came late like this. He caught on fast. He would also get me drinks and more straight cath kits if I needed them.
“I can’t fire Nan,” I told Jeff, “I love Nan, it’s just been happening for a few days, I’ll talk to her about it.”
“I have just been having such a hard time getting out of the house with my foot like this,” Nan explained to me. “It hurts so bad and I have to move slowly, plus I’m always tripping over everything at my house, and that makes me take even longer because then I hurt my foot even more.”
“Can you try waking up earlier, or leaving a little extra time to get ready then?” I suggested.
“Yeah, I’ll try that,” Nan promised, but for the next few days, she continued to show up late.
Jeff and I were getting more and more frustrated.
“I think the two of us need to talk to her to give her a final warning saying that if she can’t come in on time she can’t work here anymore.” Jeff insisted a few days after I spoke to her and there was no improvement.
“She’s so good to me when she’s here though,” I told Jeff, “she’s super-sweet, she’s fun, she takes good care of me, she keeps the apartment nice and clean, always keeps up on my laundry, she likes the same things I like, she genuinely cares about me. Once her leg feels better I’m sure things will go back to normal, just cut her some slack for now. She has a broken leg.”
“Well, we’ll do it your way a little longer, but I think you need people working for you who take the job more seriously.” Jeff insisted. “At any other job, she would already have been fired.”
“This isn’t any other job though,” I explained.
“Well, we’ll give it a couple more days your way,” he shook his head.
I didn’t end up staying home at Side by Side a couple more days though. That night I slept fitfully. I woke up in the middle of the night drenched in sweat so I threw all of the blankets off. I thought it was a little weird that I was so sweaty when I was in an air-conditioned room, but it was about 1 AM, and who gives much thought to those things when they’re half asleep at 1 AM. After throwing the blankets off, I grabbed Softia and wrapped myself around her, and then fell back asleep. When I woke up again two hours later I was ice cold and violently shivering. Immediately I pulled the blankets back up and tried to cocoon them around my small body but no matter how tightly I wrapped them I couldn’t get warm. It was almost as if there was ice flowing from my core and spreading through my veins trying to freeze my whole body from the inside out. Just from the nature of the way the cold was coming from the inside out, the quality of the shivers and chattering teeth wracking my body, and the floaty feeling in my head I could tell that I had a fever and a fairly high one at that even though there were no thermometers nearby to reach. When I get fevers, I can tell I have them before I even check my temperature.
Then I felt like my bladder was so full it was distended, I reached my arm down over the side rail of my bed and picked up a straight catheter kit through the violent shivers. My hand shook as I opened the package, cleaned my hands with the cleansing pouch, popped the lubrication packet surrounding the catheter, and then peeled open the catheter and attached it to the collection bag. Once I had the catheter inserted I felt intense sharp stabbing pain as if I had jammed a knife up there instead of a 14 French lubricated catheter. If I didn’t feel like I had to pee so bad and feel like my bladder was so incredibly full then I would have immediately pulled it back out, but my bladder felt like it was so overexpanded that it was going to pop, so I ground my teeth together and tried to let the urine drain out.
Some urine did drain out, about 100 ml, but nowhere near as much as I felt like I had in me. I tried further advancing the pointy, sharp, stabbing catheter, but all it did was literally make me cry out in pain. I tried wiggling it from side to side, no more urine drained, it just caused more tears from the pain to ooze out the corners of my eyes. Finally, I had no choice but to slowly withdraw it as my whole bladder burned so bad, nothing registered for me, not the room I was in, no other thoughts, no other sensations, all that registered for me was a fiery burning in my bladder that was so severe all I could do was lie there limply and try to breathe through it.
I knew I had a really bad UTI. I knew I had to do something. I knew if I had a fever as high as it felt like I did I probably was on the verge of becoming septic if I wasn’t septic already. Sepsis is a critical medical emergency where the body responds to an infection by damaging its own tissues. This can turn into septic shock where your blood pressure bottoms out causing your organs to shut down which is deadly.
Not wanting to let this obviously very severe UTI progress any further I knew I needed to call on-call urology. Searching through the pain, I groped around on my bed for my phone. It wasn’t easy because I was in so much pain that I could barely open my eyes. Finally, my hand hit a slick rectangular object, I closed my fingers around it and brought it up to my face.
Thank god! It was my phone! From memory, I dialed the number of my urologist. I had most of the numbers of my doctor’s offices memorized. It was pretty pathetic, but I’ve also always just had a good head for numbers as well.
Since at that point it was 3:30 AM, I of course got the answering service.
“Do you need to speak to the on-call doctor?” the woman at the answering service asked me.
“Yes I do,” I managed to gasp through waves of pain. Why else would I be calling the doctor’s office at 3:30 AM and pressing the extension to speak to the on-call?
“What’s your name and date of birth?” the woman asked
I had to provide her with this info three times before she heard me correctly. The whole time my bladder was burning and stabbing, I was freezing cold and shivering and my teeth were chattering uncontrollably. I knew I was losing valuable treatment time, and I was getting tired of screaming my name and date of birth at this woman.
“Why do you need to speak to the on-call doctor tonight?” she asked me finally.
“I’m having severe bladder pain that is too excruciating for me to handle, and I have a fever,” I explained.
“The doctor should be calling you back in 30 minutes or less,” the hard-of-hearing answering service woman explained. “If he hasn’t called you back by then, please call us back and we will find another way to page him.”
I thanked the woman and hung up the phone.
While I waited for Dr. Sterling, my urologist at Berkshire Medical Center to call me back, I lay back in bed and tried to do some deep breathing meditations to decrease my pain levels. I did some four-count breaths as I worked on some guided visualizations of the beach. My brain refused to stay away from the pain for too long though, it was so intense.
Luckily, after about ten minutes, my phone rang and it was a “No Caller ID” number, I immediately answered, hoping and praying that it would be Dr. Sterling.
“Hello?” I answered.
“Hey, this is Dr. Sterling from Berkshire Medical Center Urology, I’m returning a page from Rebecca Pava,” the voice on the other end of the phone line said to me.
“Oh, this is Rebecca Pava, thank you so much for getting back to me,” my relief was palpable. “I feel like I have a really high fever, and like I need to pee really bad, I just self-catheterized myself and only 100 ml came out but I feel like I still really have to pee, I just couldn’t get any more out, only now ever since I took the catheter out my bladder has felt like it got all cut up, it also burns and stings really bad and just plain hurts like so incredibly bad that I can’t take it.”
“It sounds like you have a UTI,” Dr. Sterling said. “Do you know how high your fever is?”
“I can’t tell because I don’t have a thermometer in reach and I’m in bed right now and I’m wheelchair-bound,” I explained.
“Do you have a blood pressure cuff or a pulse ox in reach?” he asked me.
“I have a pulse ox on my nightstand,” I told him.
“Ok, can you put it on your finger and tell me what it says?” he asked.
“Yeah,” I answered and reached over and slid the pink pulse ox finger probe over my finger so that the display could tell me how fast my heart was beating and how much oxygen was getting into me.
The numbers on the screen of the pulse ox flashed red dots for a moment then slowly began flashing on the screen before settling on their final reading. My heart rate was racing away in the 140s and my pulse ox was in the upper 80s lower 90s. I relayed the numbers to the doctor.
“You’re going to need to go to the hospital.” He told me. “I don’t like these numbers, you have a whopper of an infection and are borderline going septic if you haven’t gone septic already. Do you have anyone that can take you to the ER?” he asked me.
“Not really,” I said. “I live alone in the independent living section of Side By Side Assisted Living and my family is all an hour away, plus it’s the middle of the night. I have caregivers, but they can only work 5 to 6 hours a day because that’s what MassHealth decided, and I have no night hours.”
“You’re going to need to call for an ambulance then,” Dr. Sterling told me. “Tell them that your urologist thinks that you have a UTI that’s going septic and you need to get to the ER as soon as possible and that you’re tachycardic with low oxygen levels.”
“Okay, thank you,” I told Dr. Sterling before hanging up and calling the ambulance.
The EMTs rechecked my pulse and oxygen level when they arrived and then immediately called for a second truck. They explained to me that they were just a basic level truck and they wanted a truck with paramedics on it as opposed to just Basic level EMTs like themselves to transport me.
One of the EMTs put me on some oxygen in my nose, the other one took my temperature. When it didn’t register me as having a fever I had to explain to them what Mass General had explained to me, that due to my small fiber autonomic polyneuropathy and dysautonomia, the only way to get an accurate temperature on me is to take a rectal temperature. This is because I don’t have adequate blood flow to my peripheries so my temperature anywhere besides rectally will not be accurate, all of my body’s temperature is shunted to my core.
I could tell that the EMTs didn’t believe me and that they thought I was crazy, but I knew I had a fever and I knew Mass General was right.
When the paramedics arrived they hooked me up to their heart monitor and loaded me up on their stretcher to get me ready to go to the hospital. I also told them about the temperature issue, and they also didn’t seem to believe me.
I got sent directly to a room when I got to the hospital where a nurse and a tech were waiting for me. They lifted me onto the stretcher in the ER room, disconnected me from the ambulance heart monitor, and connected me to the heart monitor in the ER room, then they hooked me up to the oxygen on the wall of the ER room, transferred over my bags of IV fluid and tube feeding and the pumps, put my G tube drainage bag on the side of the bed to gravity and told my story to the nurse.
“She had no fever for us in the ambulance, but she states that she feels like she has a fever,” I overheard one of the paramedics say to the nurse.
Once again I tried to explain to them about my temperature and how it needed to be taken rectally, but once again, no one was listening.
The nurse finished getting report from the paramedic that had been in the back with me and then she came in to see me. She asked me all of the same questions everyone else had asked me, and I explained myself all over again. Then she told me that she needed to take my temperature.
“I need my temperature taken rectally because that’s the only way to get an accurate read on me,” I explained to her.
“Oral temps are accurate too, we can just add one degree to it,” she tried to explain to me.
Again I went through my whole speech about the small fiber autonomic polyneuropathy shunting blood to the core, and how I could tell just by the way I felt that I had a high fever, but she just kept insisting that the only way she could take my temperature was orally and that that would be just as accurate. It was like everything I was trying to tell her was going in one ear and out the other. She did also say that she would take a urine sample for a urinalysis and urine culture to see if I have a UTI, as well as blood cultures to see if I had gone septic, but I was worried that if she didn’t know how high a fever I had I would have to wait too long to see the doctor and I was already losing precious time and was so incredibly uncomfortable.
Once she had taken all of the blood and urine samples and tried to assure me that my temperature was only 98.7, she left the room and told me that as soon as a doctor picked me up as a patient and wrote orders for me for pain meds she would be in with them. As soon as she left the room I did the only thing I could think of doing, I called my safety net.
Sure, by then it was only 4:45 AM, but we had to do something. I needed them to know what my actual temperature was.
My mom answered on the third ring the third time I called her cellphone. I explained the situation to her and she said that she would call the hospital and explain to them about the temperature regulation issues and forward them the contact info of the complex care team and the nerve injury unit at Mass General in case they had any questions. She assured me that she would get them to check a rectal temp on me, talked to me a few more minutes, and then had me hang up so that she could call the hospital I was at and get them to measure a rectal temp on me.
Well, my mom somehow worked her magic, because about twenty minutes later, I was lying there shaking uncontrollably with fever chills and dripping tears due to the pain in my lower abdomen when the nurse came back in with a tube of lubricant and a rectal thermometer. My temperature was 104.3. The nurse couldn’t get over herself, I tried not to gloat about it.
When the doctor finally came in, he explained that I had gone septic from a UTI just as we suspected but luckily we had caught it before it spread to my central line it seemed. He wanted to admit me for a few days to dose me with IV antibiotics and monitor me and then if I did well I could finish the 14-day course of IV antibiotics at home. He also said he would temporarily increase my pain meds so that I could better deal with this situation.
“I’m also going to make a note in your chart that says that we have to take your temperature rectally any time we suspect a fever,” he added.
I couldn’t help but smile at that comment. I hadn’t even needed to say “I told you so!”
I stayed in the hospital for six days on the IV antibiotics, Jeff visited almost every day, he would ask for a wheelchair and help me into the wheelchair and then get the nurse to hang my IV fluid, IV antibiotics, and tube feeds on the IV pole of the wheelchair and we would go for walks all around the hospital. He would take me to interventional radiology where he would introduce me to all of the doctors and nurses that did his paracentesis (drained the extra fluid out of his abdomen), we would go to his GI doctor’s office, his primary care doctor’s office and just say hi to everyone, we’d go down to the cafeteria and I would buy him ice cream or burgers, we would just go adventuring. Then we would go back up to my floor and watch movies he brought on his laptop or play games on it.
After I finally got home from the hospital things weren’t as back to normal as we thought they’d be. Instead of just coming in late, we were having some shifts, where Nan was just not showing up at all.
“I’m feeling really sick, my leg was really hurting and then I took one of my pain pills and lay down and now I can’t stop vomiting, I don’t think I’ll be able to come in today,” she would say frequently. Or, “I totally forgot that I had my appointment with the orthopedic surgeon today, I’m not going to be able to make it in, I’ll have to reschedule, maybe Jackie can cover me?”
The problem was, some days Jackie couldn’t cover her, thank God for Jeff who was at my apartment so often watching everything they did. With a little added verbal direction from me, he was able to step in and do everything Nan did, except of course shower me. We even figured out a way for him to change me. We would cover me with a blanket and then have him hold the blanket over me with one hand and dress me with the other so that no part of me ever got revealed in a way I didn’t want it to.
Finally after almost three weeks of Nan coming in late and canceling I knew Jeff was right. I knew I had to fire her and hire someone new that would actually come to work and do their job so that Jeff didn’t get stuck working for free, not that he ever complained once about working for me.
I was too scared and felt too bad to fire her myself, so I called up Rhonda at Adlib and explained the situation to her, she said that she would take care of things and fire Nan for me, including filling out the termination paperwork. Still, that night I went to sleep feeling pretty rotten that I’d had to fire Nan.