Once a week my mom came up to visit me at Side By Side, the Assisted Living that I had been living at ever since I left the nursing home. I had spent six months at the nursing home for rehab due to deconditioning from a hospital stay and a worsening of my disease processes. One of the diseases I had was called Small Fiber Autonomic Polyneuropathy and it was slowly killing me.
I missed my mom badly in between visits, but she refused to come more frequently saying she was busy and had work to do and it was a long drive. We did however talk on the phone faithfully, every day, and hearing the voice of my safety net in my ear was always reassuring to me. One week in February when she was getting ready to leave I started vomiting for about 20 minutes straight with no let-up, I was also having cramping stabbing pain in my stomach too, and didn’t know what to do.
“Are you more stressed out about anything than usual?” she asked me as I sat at the edge of my wheelchair leaning over the toilet with my mouth watering with extra saliva trying not to throw up on the floor.
My mom’s reasoning for anything that was going wrong with me was always stress.
“Not that I can think of,” I told her.
“Did you drink anything that you don’t normally drink?” she asked me. By then my mom had come into the bathroom behind me and was rubbing my back and pulling stray strands of my long dark blond hair away from near my mouth as I puked
“No, the only thing I drank today was Gatorade and iced tea and that’s stuff that I always drink, it all drained out into the G tube drainage bag anyways,” I told her, showing her the blue liquid filling the drainage bag.
“Maybe you should call your doctor then,” she suggested.
“Yeah, I probably should,” I agreed and picked up my phone off my lap to call the third number down on speed dial, Dr. Hussein, my GI doctor, between waves of vomiting bright yellow bile.
You know you’re chronically ill when…. You’ve got your GI doctor as one of your top 3 numbers on speed dial!
Dr. Hussein asked me when the last time I’d had a bowel movement was, and I had to stop and think. Not today. Not yesterday. Not the day before that. Not the day before that. Not the day before that either. Come to think of it, it had been a good week since I’d had a bowel movement.
“Have you been passing gas?” he asked me.
I had to think about that too.
The answer was…not really. Then I started with the vomiting again. This time nothing was coming out, I was just dry heaving because nothing was left inside me. Dr. Hussein could hear me on the other end of the phone line.
“You need to get yourself to the ER now,” he told me. “I think you may have another bowel obstruction. I’m going to call ahead right now and let them know you’re coming in.”
I hung up the phone and handed it to my mom. With the dry heaving and retching I didn’t have enough voice to follow Dr. Hussein’s instructions. My mom got my gist and dialed 911.
“I need an ambulance to Side By Side Assisted Living for my 25-year-old daughter. She has gastroparesis and her GI doctor thinks she has a bowel obstruction. She can’t stop vomiting and dry heaving. She is on tube feeding and IV fluids continuously and is wheelchairbound.” My mom told the 911 operator who assured us that an ambulance was being sent out momentarily.
After my mom hung up she wrang out a wet washcloth and then placed it over my forehead.
It seemed to take an eternity for the ambulance to arrive.
First, the fire department got there. We heard the sirens get closer and closer and then my mom went and propped the door open.
“What’s going on here?” One of the firemen asked when all four of the oversized firefighters came piling into my small apartment.
“Becca has been vomiting profusely, has really bad belly pain, and hasn’t had a bowel movement or passed gas in a really long time, her GI doctor is worried that she has a bowel obstruction.” Explained my mom, as I continued to dry heave.
Another one of the firemen came over to me, knelt down near my wheelchair, and put a pulse oximeter on my finger. My heart was racing in the 130s and my oxygen level was starting to drop onto the lower side of normal at around 93%.
“There’s an ambulance on the way for you,” he reassured me. “We’ll get you feeling better,” He patted me on the shoulder awkwardly before standing up.
I thanked him, but I knew I would never totally feel better, that was the nature of chronic illness.
My mouth was watering with excess saliva and the pit of my stomach burned like fire as waves of nausea pulsated through me and my stomach heaved upward toward my esophagus, yet nothing was there so my whole body just jerked and retched with my throat scratching up a gravelly feeling but nothing else.
When the ambulance arrived I was pale and shaking with bright red cheeks. They removed the sides of my wheelchair and with one EMT on each side lifted me out of the wheelchair and onto their stair chair that they used to carry me down the front stairs and out of the house, where they lifted me onto the waiting stretcher that was waiting in front of their ambulance.
Once I was on the stretcher they secured me with multiple seatbelts, covered me with blankets to warm me up from the February chill, and loaded me into the ambulance.
“Have you eaten anything funny lately?” One of the EMTs whose sticker actually said she was a paramedic, asked me as she was placing heart monitor leads on my arms and legs.
“No,” I told her. “I actually can’t eat at all. I have gastroparesis and am on tube feeding and can barely tolerate that. I can only feed at 30 ml per hour and because I feed at such a low rate and have something called dysautonomia I also have to run these IV fluids 24/7 too.” I gestured to the fluids that were coming out of the tubing in my chest and hung on the IV pole on the stretcher along with my tube feeding pump and formula bag.
The paramedic was frowning at the monitor.
“Your heart rate is super fast,” she told me. “Does it always go this fast?”
“How fast is it?” I asked.
“Well it’s racing along at 153 right now,” she told me.
“Oh wow,” I told her, feeling a little scared inside, maybe this was worse than just a little extra nausea. Maybe my doctor actually wasn’t over-reacting about this like I had originally thought.
“I usually am about 100 or 110,” I told her. “I do run fast because of my autonomic SFN, but not that fast.”
“I’m going to do a quick EKG on her before we get going,” she called ahead to her partner, who was a tall skinny kid who still had a lot of acne and looked like he was barely old enough to have a license. If I had been ordering him Mcdonalds I probably would have ordered him a Happy Meal and made sure he got the toy to play with. I was relieved it was him driving and her helping me in back.
“Ok sure,” he called back to her.
She then proceeded to cover me in EKG lead stickers and hook them up with wires to the portable monitor.
“Stay very still,” she told me.
I didn’t move an inch. I was starting to get nervous.
“Okay, all set,” she told me a split second later.
“How did it look?” I asked.
“Well you don’t seem to be having a heart attack, but your heart is beating quite fast and it does like like you have some flattened T- waves and some other changes on the EKG that the doctor will have to look at, but nothing immediately life-threatening.” She told me.
I knew my flattened T-waves meant that once again my electrolytes were out of whack and that my rapid heart rate meant something else was going on that they needed to figure out. Sighing to myself, I lay my head back against the stretcher and wished I could trade my body in for one that actually worked. Jeff and I had had that conversation a whole bunch of times. We had jokingly decided we were going to put ads on Craig’s list for new bodies, unless we could find better deals on Amazon or Ebay.com.
It only took minutes to get to the hospital, the whole time I was alternating between dry heaving into a blue plastic vomit bag and laying back in the stretcher holding my belly and trying to find a way to get comfortable with the terrible pain in my stomach. Once we were five minutes away, the paramedic had to call in report.
“We are inbound to your facility with a conscious and alert 25-year-old repeat two-five-year-old female whose chief complaint is nausea and vomiting. Her vitals are as follows. Blood pressure 87 over 39, heart rate 154, oxygen level 93% on room air, respirations 20, temperature 98.1 degrees, EKG performed en route. She is currently resting comfortably on the stretcher, any further questions?”
“No further questions. Room on Arrival. Over.”
“Over.”
I had to wonder to myself how anyone could possibly quantify the state I was in as resting comfortably, but not wanting to cause any issues, I kept quiet.
The ER did a bunch of tests including an x-ray and CT scan which confirmed that I had a bowel obstruction.
“We’re going to need to admit you and stop your tube feeding immediately. We can add vitamins to your IV fluids to give you a little more nutrition parenterally, but we can’t give you anything via your digestive tract until your obstruction subsides. We will also hook your G tube up to the suction canister to help get this obstruction taken care of. Hopefully this way we can avoid having your intestines die or your bowel rupture and won’t have to do any invasive surgery.” The ER doctor explained to me.
“How long will I have to stay here?” I asked the ER doctor.
“I don’t know yet,” the ER doctor told me. “That will depend on how long it takes this blockage to subside. If it seems to be taking too long we may have to start you on TPN.”
“Oh, ok,” I said, feeling a little nervous about this, I had heard bad things on my Faceboook groups about people being on TPN and having it ruin their livers or making them have sepsis more often. I did know though, that because my GI tract was going to continue to shut down due to my autonomic SFN, I was eventually going to have no choice but to go on TPN to save my life, I was just hoping to put it off as long as possible.
“We’re going to have you go to the fourth floor to the Telemetry unit so that we can keep you on a heart monitor. Your potassium is really low and so are a few other electrolytes and it’s affecting your heart rate and rhythm. We’re going to slowly replace your electrolytes overnight but we need to closely monitor you while we do that. You should be getting moved to your room fairly soon.” The ER doctor told me.
As soon as I’d been settled in, in my room on the Telemetry Unit I called Jeff. He picked up on the first ring and I told him what was happening.
“I’m going to come visit you tomorrow,” he promised me.
“How are you going to get here?” I asked him.
“I’m going to take a cab.” He said.
Sure enough, Jeff was down at the hospital by 11 the next morning.
“Are you going to be okay?” he asked me his hazel eyes were big and full of worry.
“Yeah, I’ll be all right,” I told him, “I’m in and out of the hospital a lot, I just have a bowel obstruction, I just need to be on extra IVs for a little bit and have extra monitoring until this dumb obstruction clears.”
“Does it hurt?” he asked.,
“Well my stomach is killing me and I’m pretty nauseous, but they’re giving me pain and nausea meds pretty regularly round the clock to try and help,” I explained.
“Is there anything I can do?” Jeff asked.
“You just being here and being my friend is plenty,” I told him. “You have no idea how much it means to me that you took the time to come here and visit me. Growing up I spent most of my childhood going in and out of hospitals and at first, my mom and grandmother would stay with me and my dad and grandpa would come to visit and my girl scout troop came to visit once, but as I got older people stopped visiting. My parents wouldn’t let people visit. They thought I liked being in the hospital and somehow subconsciously allowed myself to get sick so often because I enjoyed being there so much, so my dad pretty much stopped visiting completely and they wouldn’t really let anyone else visit me. My friends wanted to visit, but my parents wouldn’t let them. My mom was the only one who ever visited me. So having you here with me, a visitor besides my mom, is like so awesome,” I explained to him feeling tears threatening to well up behind my eyes.
Jeff leaned in toward me, and for a second I thought that he was going to hug me but then instead, we both kind of chickened out and he stroked my arm reassuringly.
“Well, whenever you’re in the hospital I’ll visit you. You deserve visitors. That’s a lot of bullshit what your parents did to you.”
“Yeah I know,” I agreed. “I love them and everything, but they’re definitely not perfect.”
“Well that’s the understatement of the year,” Jeff said.
I just laughed and shook my head.
Jeff and I loaded up my laptop and continued my movie education interspersed with a whole lot of side commentary from both of us. We had such a good time I was almost able to forget that I was actually a patient in a hospital with a painful, nauseating bowel obstruction.
Eventually, though my pain meds wore off and a stabbing cramping pain returned to my stomach, it hurt so bad that I was having trouble getting deep enough breaths in which was making my heart start beating faster.
“Hey guys,” A nurse poked her head in the room, where I was lying in the bed legs drawn up to my stomach, a death grip on my bear Softia, trying as hard as I could to breathe with the pain and focus on the movie playing on the laptop sitting on the bedside table that was next to the bed in front of Jeff who was sitting in a chair no longer paying much attention to the movie, watching me instead as I took in raggedy breaths against the agony.
“What’s going on in here?” she asked us, “Her heart rate is going nuts”.
“We were watching a movie,” Jeff spoke for me when he saw I was hurting too bad to do too much of anything except lie there. “But Becca started to feel worse, all of the sudden she started looking like she felt like shit, I was just about to go looking for someone to see if they could help her.”
“Are you in pain Becca?” the nurse asked me.
I nodded my head as another crampy spasm shot through my belly.
“Do you want some pain meds?” she asked me.
I nodded my head again.
After the nurse gave me some IV Dilaudid through my Port-a-Cath the pain subsided somewhat immediately but I felt tired too. I tried to force myself to stay awake and continue watching movies with Jeff, but my eyelids were getting heavy and closing against my will, and without even noticing it I kept falling asleep.
“I can leave if you need to sleep,” Jeff kept telling me.
“Please don’t leave,” I kept telling him and struggling to stay awake. But eventually, at some point, I fell all of the way asleep and when I woke up again it was hours later and to my deep disappointment, Jeff was gone. He had however left me a little beanie baby puppy from the gift shop and a get-well card.
I smiled at the beanie baby. He knew exactly what I liked.
I stayed in the hospital for about a week and Jeff came just about every other day. When I finally asked him where he was getting all of the money for cab rides to the hospital he admitted that he wasn’t taking cabs, that Cindy (one of the CNAs at Side By Side) was giving him rides.
“Are you two a couple?” I had asked him, feeling sharp twinges of jealousy and even panic. I didn’t ever imagine that Jeff would want to date me, but the idea of him dating Cindy made me feel like I wasn’t as important to him as she was and I didn’t like the way that felt.
“Cindy? No!” Jeff laughed. “Never! She has that funny furry little mole on her face, it would distract me every time I tried to fuck her. I would be afraid it would try to eat me or something! I could never get together with that! I just asked her for a ride that’s all. She might have the impression that I’m interested in her, but that’s not my fault, she shouldn’t assume things. I just told her I had a buddy at the hospital I wanted to visit and asked if she could give me a lift.”
“Does she know that the buddy you’re talking about is me?’ I asked.
“Well, no, I don’t think she knows you’re female either,” Jeff smiled his troublemaker smiled.
“You’re bad Jeff!” I said but smiled too. I was just glad that he was visiting me and relieved that he wasn’t dating Cindy.
The day before I was discharged from the hospital Dr. Rose came by my room.
“Becca,” he knocked on the door frame and then pulled open the curtain.
“Hi, Dr. Rose!” I said, surprised to see him in the hospital, not on the sixth floor of the Medical Arts building.
“I heard your belly was not cooperating with you,” he said.
“It definitely was not,” I agreed.
“How are we doing now?” he asked me.
“I’ve been told that the blockage is cleared, but that my tube feed isn’t getting absorbed. It goes into my small intestines through my J tube and then it backs up into my stomach and goes back out my G tube into my G tube drainage bag We had to water it down because otherwise, it was just making me throw up constantly, but now even with it watered down I’m still refluxing it back out into my drainage bag.”
“Well, that’s no good,” Dr. Rose said. “How much did you dilute it by when you watered it down?”
“We’ve been doing two boxes of Peptamen Prebio and two boxes of water and running them at 30 ml an hour continuously,” I explained.
“And you’re even refluxing that back up?” Dr. Rose asked.
“Yup.”
“Has interventional radiology checked to see if the tube is in the right place and functioning okay?” Dr. Rose asked.
“Yup,” I said.
“We’re going to have to run it by Dr. Hussein, but I think we’re going to have to up your IV dextrose and start giving you vitamins and minerals and trace elements in your IV fluids and further reduce the rate of your tube feed. I don’t want you totally off your tube feed because as long as you’re on a little bit of tube feed it protects your liver and your body from certain hazards that come with TPN and having absolutely nothing in the GI tract, but we definitely need to offer you more intravenously.” Dr. Rose explained. “As long as we can get you to tolerate a little bit of tube feed I’ll want to keep you on it, but if you keep getting bowel obstructions we’ll have no choice but to take you off of it completely.”
A couple of days after I was discharged I had a follow-up appointment with Dr. Rose.
“I spoke with Dr. Hussein,” he told me. “We’re going to keep your tube feed formula diluted to half strength and decrease your feed rate to 10 ml an hour, but also start you on vitamins and trace elements in your IV fluids and increase your dextrose. The vitamins will come in separate vials from the IV bags and your nurse will show you how to draw them up and inject them into the IV bag every morning. You have to inject them into the bag an hour or less before you’re going to spike the bag and hook up to it for the day. The vitamins will turn your bag neon yellow. We’re going to try doing the decreased tube feed and the vitamin/electrolyte bags for a couple of weeks, if your labs start showing signs of malnourishment or if you start losing crazy amounts of weight we’re going to have to start you on TPN, otherwise, we can buy time a little longer. The key thing for us is going to be we’re going to have to make sure to draw your blood every week and if you have any symptoms of low potassium, low blood sugar, or feel even the slightest bit off you need to call your nurse and I will have her draw stat labs on you to make sure that you’re not low on anything. Got it?”
“Yeah,” I told him.
“Don’t worry,” he reassured me, “we will keep working with you. We are a team.”
Back then we worked together well. Back then we actually were a team.