Jeff’s TACE procedure got set up for the second week in April. I was so worried about him, that I could barely think about anything else. I would be sitting in “my spot” at the main building on my laptop, writing a personal essay about getting locked in the Quiet Room as a ten-year-old and then all of the sudden I would find myself writing, “Jeff…Cancer…TACE procedure…” in the middle of a bunch of prose about feeling like a caged animal.
“I’m going to be fine,” Jeff kept telling me, every time he saw my face cloud over, he knew I was worried about him without me even saying anything. We had been hanging out together so often for so long that we no longer needed words to communicate.
“I don’t even feel sick,” Jeff kept telling me.
I tried to believe him. He didn’t look sick, his hair was thick and dark and curly and shiny. His face was full with clear skin and it wasn’t too red or too pale he was keeping up on shaving and hygiene. He hadn’t lost weight and his belly wasn’t even that swollen from the liver failure ascites. There was no yellow tint to his skin or eyes.
“Are you doing okay?” Jeff asked me one day.
“Yeah, why?” I asked.
“You look really pale all over, but your cheeks are really flushed,” he said. “I’d be more worried about you than me.”
“I think I’m okay,” I told him. We were in my living room. I was in my wheelchair and he was sitting on my couch we had a whole bunch of photos and cards spread out in front of us on the coffee table that was made out of an old window with red-stained wood and big glass window panes, and we were trying to make a sort of scrapbook out of them. Jeff loved to take cards and scan them into his computer to save them and then he would print them out as pictures to hang up on the walls or put in photo albums or scrapbooks.
“When is your nurse Jen coming again?” he asked me as he held up a picture of the two of us down in Lee at the farm with the missionaries.
“She’s supposed to be coming tomorrow,” I said. Handing him a gluestick so that he could glue that photo into the book.
“That’s good,” Jeff said as he finished gluing it in and began sifting through more photos on the coffee table and latching on to a picture he had taken from a greeting card of a dog sitting in a bubble bath with a cigar hanging out of his mouth.
I thought Jeff was crazy, but apparently, he was more in tune with how I felt than even I was, because when Jen came by the next day she was worried about me too.
I was already up in my wheelchair when she got there at 10:30 AM, but I was still at the house. Nan had just left half an hour earlier. I did notice that I was way more tired than usual, but I also hadn’t been sleeping well since Jeff’s cancer diagnosis. It was hard to hold my head up and the room felt like it was spinning and trying to pin me on my side. This happened to me frequently though, so I didn’t think much of it. My heart also felt like it was pounding away inside my chest trying to hammer out an escape passage, but my heart often beat fast and so again, I didn’t think it was anything too odd.
“Hey Becca, good morning,” Jen greeted me when I opened the door for her.
“Hi Jen,” I said back, but my voice sounded far away.
“Are you okay Becca?” Jen asked me.
“Yeah, I think so,” I told her, but my words sounded like my mouth was full of marbles.
“Let’s get some vital signs,” Jen said to me. “You seem a little off.”
Jenn put down her bag on one of those large pieces of paper that she always carried with her, and then pulled out her blood pressure cuff, stethoscope, thermometer, pulse oximeter, and gloves out of that bag. She took my blood pressure three times in a row shaking her head each time. Finally, she straightened up and looked at me.
“Are you feeling very dizzy?” she asked me.
“Very,” I admitted.
“Your blood pressure is 78/46,” she told me. “I took it three separate times but that’s what I got all three times. I don’t like that at all.”
She slipped the pulse oximeter onto my finger. My oxygen level was good at 97%, but my heart rate was in the 140s. To double-check it she put her finger on my wrist and checked my pulse the old-fashioned way.
“I’m still getting in the 140s,” she said. “ I don’t like that either, plus you’re in A-fib.”
Then she scanned my forehead with the thermometer.
“At least you don’t have a fever.”
“Well that’s something,” I said, laughing weakly.
“I think I’m going to need to send you to the hospital,” she told me. “I can’t keep you at home with a blood pressure that low and a pulse that high at the same time. It’s just not safe. Plus you’re in A-fib and you’re not usually in A-fib unless your potassium is critically low. I’m going to change your port needle, draw your weekly bloodwork, and then call for an ambulance.”
“Can’t we just call Dr. Rose?” I begged.
“Dr. Rose would just tell me to send you to the hospital, and with vital signs this far off we don’t have time to play around, we need to get more fluids and probably electrolytes into you as quickly as possible.”
“I hate the hospital,” I said.
“I mean, you’re an adult, ultimately it’s up to you, but I want you to understand that you are very sick right now and not going to the hospital would be very foolish and possibly deadly.”
“I’ll go,” I sighed.
It was getting really hard to keep my eyes open and my heart was beating so fast that it was almost like a blur but it was painful at the same time. I knew I needed medical attention.
Once my port needle had been changed and I had a new dressing on top of it Jen went ahead and called for that ambulance. I just focused on staying conscious. The EMTs arrived within about 7 minutes instead of at least ten. I guess they take calls coming in from a nurse more seriously than calls coming in from a patient or their mother.
Once again the EMS crew lifted me out of my wheelchair by removing its side rails, and just slid me over onto their stair chair. Then they once again carried me out to their stretcher that was waiting in front of their ambulance.
At the hospital, I was fading in and out. They explained to me that my electrolytes were at critically low levels again and that I was severely dehydrated. Just as Jen and I suspected, my A-fib was a result of low potassium.
“We are going to have to admit you so that we can replace your electrolytes overnight and monitor your A-fib. Because your blood pressure is so low and your heart rate is so high we are going to admit you to the Step Down unit. It’s the unit that we send people to when they are too sick to just be monitored on the Telemetry unit but not quite sick enough that they need the ICU.” The doctor in the ER explained to me.
I was so out of it that time was fluid. Doctors and nurses and techs were coming in and out of the room. At some point, they moved me to my room on Step Down. I meant to call Jeff, my phone dinged a bunch of times and I remember hearing it and looking at the screen and seeing that I had messages from him, but then the fog of exhaustion pulled me back under.
Over the next few days, time finally began to solidify. The next time I was fully aware of my surroundings it was three and a half days later. My head was still sort of filled with fogginess but I was more awake. I felt around for my phone, it was sitting by my side, dead.
As a professional patient, I knew that the TV remote also had a red button on it that was a call bell for the nurse so I pressed it and waited for someone to come in. When an aide finally answered, I had her bring me my purse so that I could grab my charger cord and have her plug my phone in.
A bazillion missed calls from Jeff popped up as soon as my phone powered back on. The hospital had contacted my mom as my next of kin and health care proxy, but poor Jeff had no idea where I was, I immediately called him.
“Oh my God, Becca, what happened?” he asked me.
“I’m okay, I’m just in the hospital, I had an issue with dehydration and low electrolytes and it just really screwed me up,” I explained.
“Never do that to me again,” he said.
“I’m sorry, it wasn’t on purpose,” I said.
“I know,” he said in a gentler tone, “I was just so scared something awful happened to you.”
“That’s what I’m afraid of happening to you,” I told him.
Then we both fell silent.
I stayed in the hospital for a total of about a week. My mom came up to visit me my fourth day there.
“This sucks,” I complained to her. “No matter what I do, and where I live, I always end up in the hospital.”
“I know its frustrating,” she agreed with me, “but maybe once they can get your electrolytes under control and you start IVIG than things will get better.”
“I feel like IVIG is just a pipe dream though, I feel like they’re never going to get my electrolytes under control because no one wants to give me TPN and Dr. Hurrowitz says the only way we’re going to get them under control is if I completely stop the tube feeds.”
“I would just keep trying to get all of your doctors to communicate with each other, I would say that would be the best thing to do to straighten things out. Just keep trying, eventually things have a way of working themselves out,” my mom said.
I wasn’t convinced.
A couple days after my mom’s visit Dr. Rose stopped by.
“We need to tweak things a little bit again, I guess,” he told me.
“I guess so,” I agreed. “I can’t just keep getting dehydrated and having my electrolytes getting all messed up.
“We have to figure out why your electrolytes are getting so out of whack,” Dr. Rose said. “So let me ask you a few questions.”
“Okay, sure, ask away,” I said.
“Are you eating or drinking anything by mouth?” he asked me.
“I’m not eating anything by mouth, but I’m drinking sips of clear liquids that are immediately draining back out into my G tube drainage bag,” I explained.
“Are you vomiting?” Dr. Rose asked.
“Yes,” I answered.
“What is it that you’re vomiting?”
“I’m vomiting up a whole bunch of bile, usually right after I get my meds,” I answered.
“Are you taking your meds by mouth?” he asked.
“No, all of my meds go through my J tube, but anything going through my J tube makes me extremely nauseous and makes me vomit or almost vomit,” I explained.
“Do you drain your J tube?” he asked.
“No, never, I know better than that,” I answered.
“Do you feel like your nausea meds are working?” he asked.
“Not in the slightest bit,” I answered.
“That’s what I thought,” he said. “What I think is happening is that you are getting really nauseous from your meds even though they are going through your J tube, the meds are making you vomit, and all of the vomiting is what’s causing your electrolytes to get so depleted. I think it’s also part of what’s making you so dehydrated. I agree with you about the nausea meds, I don’t think that your Zofran tablets and liquid Phenergan are helping you enough anymore. I want to perscribe you the intravenous form of those meds. They will be a lot stronger than the pills and liquids through your J tube that you’re on now. They will also work much quicker and be much better for you because they will bypass your paralyzed GI tract. You can take the Zofran up to 4 times a day and the Phenergan up to 3 times a day. How would you feel about that?”
“That sounds like a really good idea,” I said. Whenever I am in the hospital, they give me IV Zofran and IV Phenerga,n and it always worked so much better than then the J tube kind I took at home. Dr. Rose’s plan sounded like something that would really work. I was actually getting excited about it.
“I’m going to send in the script for the IV meds to your infusion pharmacy today and the case manager here at the hospital will make sure they get delivered to your house the same day you get discharged. Your nurse can teach you how to draw up the IV meds and inject them into your port.” Dr. Rose said.
“Okay sounds good,” I said.
“The other issue I wanted to discuss with you was your BUN.” He said.
“Was it high again?” I asked. BUN stands for Blood Urea Nitrogen and is a measure of kidney function. A high BUN can indicate kidney dysfunction, but it can also indicate dehydration.
“It was quite high when you were first admitted, it’s stabilizing now. I don’t think you have anything to worry about regarding impending kidney failure or anything like that though, I think you were just very dehydrated.” Dr. Rose explained.
“How can I be getting dehydrated? I get that big huge bag of IV fluids every day.”
“We must still not be giving you enough even with that big bag. You need a lot more fluids than most people because of your dysautonomia and diabetes insipidus. I was trying to guess at how much you needed, but I obviously didn’t guess well enough. In addition to your bag of D5W with 40 K and vitamins with trace elements, I’m also going to have you run an additional bag of fluids a day. The second bag of fluids will be normal saline. I’m going to have the infusion pharmacy send you another IV pump for the saline and something called a Y-site extension, your nurse will show you how to add it to the end of your port tubing to make your port have a double lumen (two lines available to hook up tubing or meds to), then you can hook up one end of the extension to your regular IV fluids and one end of the extension to this new bag of saline,” Dr. Rose told me.
“I can do that,” I told him.
“Great, I will send that order in to your infusion pharmacy as well, and I will also fax copies of these new orders to your nurse. Do you have any questions?” he asked.
“No, I don’t think so,” I told him. I almost brought up the issue of TPN and stopping tube feeds, but we had just made so much progress that I was scared to push my luck. Plus, I figured we might as well only do a couple changes at a time because otherwise things would get too confusing, and we wouldn’t know which changes were the ones that were helpful and making the difference.
When the IV meds got to my house the day I got home from the hospital, I called Jen to let her know the meds were there, then I had Jackie give me my J tube meds.
When Jen got there, I watched very carefully as she showed me how to add on the Y-site extension.
Then Jen showed me how to flip the plastic cap off the top of the Zofran vial, scrub the top down with alcohol while counting to 20 Mississippi, pull back 2 ml of air in a 3 ml syringe, pull the cap off of the syringe exposing the needle, insert the needle into the rubber stopper on the top of the vial and depress the plunger, then flip the vial upside down and pull back on the syringe keeping the needle immersed in the liquid until all of the liquid Zofran was pulled into the syringe, remove the needle from the now-empty vial, and recap the syringe.
Once Jen finished doing that part with me, she had me prep two saline flushes. Then she had me pause my IV pump for my IV fluids, disconnect my tubing from my port, and cap the tubing off with a protective blue cap. After that, I wiped the hub of my port down with an alcohol wipe and then screwed the saline flush into it and pushed the saline through. Then I twisted the needle and cap off the base of the syringe with the Zofran in it and screwed that syringe into the same hub and pushed the medicine through. Then I removed the Zofran syringe, flushed the other saline flush through, repeated the same process with the Phergan followed by a saline flush, and then hooked back up to the IV fluids.
Once I finished, I waited. That overwhelming sickening feeling where my mouth started watering and I had a burning in the pit of my stomach never came! I still got the feeling where I felt too full, but I didn’t throw up or feel like I was going to throw up. It was amazing.
“Those drugs your shooting yourself up with must be making you feel pretty good!” Jeff said. Watching my face as I realized that I now had a way of taking my J tube meds without needing to vomit multiple times a day.
“It works!” I told him excitedly.
“Yup, pretty soon you’re going to decide to stay up all night to paint your room pink, and then you’re going to change your mind and decide to paint it blue, and then you’re going to change your mind again and decide you want to paint fire engines all over it, but you’re not going to let it dry in between and then your room is just going to be all wet brown paint, and then you’re going to decide its funny to prank call the police station and you’re going to get arrested, that’s what shooting up with all those drugs is going to do to you,” Jeff said, with a twinkle in his eye.
“Sure Jeff, that’s what taking an anti-nausea medication is going to do to me.” I laughed.
“Is that the story you’re going with? It’s an anti-nausea medications? Well, you can try and see if that will hold up in court. Better you than me.”
“Well, you know, they’ll see my wheelchair and my port and my feeding tube and maybe they’ll believe me,” I said playing along.
“You two are crazy,” Jen shook her head.
“No, it’s the rest of the world that’s just too uptight,” Jeff said.
I smiled, I had to agree with him. Jeff was a breath of fresh air in my life.