Medicating Jeff
Before I went septic from my UTI a second time since moving into Side by Side, Jeff and I kind of got a routine going. Every morning around 6:30 AM he would call me up to see if I was awake. Of course, if I wasn’t awake, his calling me would wake me up. We would say good morning to each other and how much we loved each other over the phone. I would ask him if he took his Lactulose yet or his other morning medications.
“No, I forgot, I’ll take them right now,” he would tell me. On the other end of the phone, Jeff would start rustling around. Grabbing the lactulose and opening his mini-fridge he would pull out a Coca-Cola. The Cola was a chaser for his nasty tasting Lactulose that he hated so much. He gulped down the lactulose making a big deal of it. At the same time, he was chugging the cola to get the taste out of his mouth. After that, I would hear the rattling of pills and then hear the sounds of swallowing.
Keeping Jeff’s Liver Happy
“Took everything,” he would tell me. “If I shit my pants from the lactulose while I’m in bed with you, it’s your fault, not mine, you’re the one who made me take the lactulose”
“I’d rather keep your liver as happy as we can, so even if you do poop in my bed I won’t get mad at you, I’ll just know that it’s the Lactulose pulling toxins from your body,” I would explain to him.
Then he would come over to the apartment (I had given him a copy of the key for a week after we started doing “it” together).
Home Hospital Bed For Two
When he got to the apartment we would say good morning to each other again. Then we would tell each other how in love we were again. This time we would do it while Jeff was climbing in bed with me. I tucked Jeff in next to me under my Trolls comforter and we got all snuggly together in bed. Then we would just talk.
Snuggles and Chats
Sometimes we would talk about what we were like when we were little kids. Other times we would talk about nursing homes and hospitals we’d been in.
I told him how I couldn’t seem to stay out of the hospital. I either had electrolyte imbalances, issues with my vital signs, or a UTI that got out of control. We would talk about what going through school had been like for us. He told me about all of the car dealerships he’d worked for. I told him about nursing school and then switching my major to writing. He asked about all my writing projects I had going at the moment.
“Can you help me write a memoir about my life?” Jeff asked one morning. As we were both cuddling together under the Trolls comforter
“Definitely,” I told him. “I would love to do that. Your story could inspire a lot of people. I know it will touch a lot of people’s hearts.”
“That would be awesome,” Jeff said.
The Morning Med Routine
After our morning snuggles and chat session, Lauren or Melody would come in to get me ready for the day. They usually came around 8:30 AM. As soon as they got there they would get busy crushing up my pills. Then heating up water to mix with the crushed pills. Once they mixed the crushed pills with hot water they added the liquid medications. The whole concoction would go through my J tube and straight into my intestine.
A Watchdog Named Jeff
Jeff watched them like a hawk as they disconnected my old IV bags. Then they hooked up two new IV bags and the tube feeding bags. They changed the IV bags and tube feeding bags every 24 hours. He watched them push my crushed meds through my J tube while I dry heaved. At the same time, I pushed my IV meds through my port. My body was having a harder and harder time tolerating anything through my digestive tract.
Jeff knew exactly how everything should go for my morning and evening care and could do it in his sleep. Jeff would catch any mistakes made by Lauren or Melody. Even though he would continue chilling with me, he was still aware of what they were doing.
Once we were all done with my morning medication routine I connected my IVs and tube feeding. Then I pressed start on all three pumps.
Jeff-Line Fashion
Because I couldn’t dress myself, Jeff liked to help me once we finished with meds.
“Just pick me out four different shirts,” I would tell him. “I’ll choose between the four different shirts you pick me out.”
So, he would go through my drawers and pick out four shirts. I would have him help me narrow down the shirts as I looked at them. We would do this until we finally decided on the perfect shirt. Then he would go into my pants drawer and find me four pairs of pants. They had to match the shirt I was wearing. Sometimes he needed a little help from Lauren or Melody on what actually matched, but he was pretty fashion conscious for a guy for the most part.
Once I was wearing my “Jeff-Line Fashion”, Lauren or Melody did my hair while he messed around on his laptop. He knew they couldn’t do anything too bad to me just brushing and braiding or styling my hair.
My Movie Education
If Melody or Lauren didn’t need to accompany me to any appointments and if Jeff didn’t have any appointments, we would watch movies together until lunchtime. Jeff thought I was a deprived child because of all the classic movies I hadn’t seen. We watched “Cannonball Run”, “Ernest Goes to Jail”, “Ernest Goes to School”, “Stepbrothers”, “Superbad,” “Armageddon”, “Blair Witch Project”, all the “Grumpy Old Men” movies, all the “Bad Boys” movies, “Baywatch (both the old shows of it and the new movie that came out a few years ago), and so much more.
Jeff would go over to the main building for lunch. Sometimes I would go with him just to say hi to people and be sociable. Usually, though, it was just too much aggravation.
Being in The Way
Terri the cook did like me. However, she and Cindy were constantly on my case around mealtimes at the main building. Everyone had an assigned seat there, in the kitchen or dining room. In my mind, it seemed like there was a lot of space for me. I could pull up to my spot at the fireplace and sit next to the two comfy chairs. That way I could enjoy watching the fake flames while interacting with the other residents and being friendly. However, wherever I parked my wheelchair, it was the wrong spot. Cindy and Terri insisted that I was in the way. They said that I had to move or the aides serving the meal would spill hot food on me.
Hot Food Dumping
For the aides to spill hot food on me where I was sitting, it would have to be intentional. They would need to bring the plates of food out, veer away from the residents at the table, purposefully walk over to the corner I was sitting in and dump the plate of food over my head.
I’d had so much crap happen to me and been treated so badly in my 26 years of life, that I actually wouldn’t really have been that surprised if that happened to me. It didn’t, but I just stopped going over to the main building during meals. Chrissy had originally told me it was mandatory, but no one actually really seemed to care. The incident with John had changed things. It seemed like no one at Side by Side really cared what did or didn’t happen to me. I was just a screwed-up girl looking for trouble with men.
Our Daily Outing
After lunch, Jeff would push me down the street and we would walk to the corner store. He would buy candy and chips or subs. He never liked Terri’s cooking and would always take a few bites and never more. Terri hated him for that. Jeff was always ordering out Chinese food or getting subs from the corner store instead. Or he would have Terri make him a Turkey sandwich with extra mayo and mustard. She would grumble and complain the whole time she was slapping it together.
After Jeff got his food and snacks at the store, we would head back to Side by Side. On the walk home, we always stopped and said hi to all of Nan’s friends. Back at Side by Side, we played Monopoly online. Then he would try to teach me how to play certain video games, but I did not catch on quickly. After smashing the little racer driver in the car into every possible obstacle, we changed gears. Jeff took out his remote-control car. He reprogrammed the entire car and got it to run up to 50 miles per hour. It was amazing the things he was able to do just by looking at one video or one diagram.
Winding down the Day
While Jeff was working on his car I would write. Then he would take out his computer while I continued to write. Jeff was always updating or fixing something on his computer. While he worked on it, he swore loudly, turned bright red, and worked himself up with frustration. Eventually, he always figured it out.
Right before Melody or Lauren were due to come back for nighttime routine. We would get in bed and cuddle together, and I would read him some of my writing.
When Melody or Lauren came back, they had to do the same thing with my meds. They crushed the pills, mixed them with hot water and my liquid meds and put them through my J tube. I took IV meds at night too. At night I was on 2 Liters of oxygen all night. Jeff always double-checked the concentrator to make sure it was on the right setting and that it was working right. On a table at the bedside, they would leave me a bucket full of unopened catheter packages. They would also put an empty bucket there. It was to put the catheters and catheter bags in once I finished with them. That way whoever worked in the morning could take care of them. When Melody worked nights, I always got a shower.
Jeff always stayed until after they left, we would cuddle in bed and just enjoy each other.
Oncoming UTI Symptoms
It seemed like things were going so great. But then in October, I started having severe pains in my vaginal area. I kept feeling like I had to go pee. When I would straight catheterize myself barely any urine would come out. Then I would have this intense sharp piercing pain in my urethra. It would burn so bad once I got over the sharpness.
The second Monday in October I must have tried to straight catheterize myself about ten times. Every time I did less than 25 ml came out. Excruciating pain resulted, where I felt like a knife was going up the inside of me. That was followed by a burning that was even worse than before. The urine that did come out smelled fishy and strong almost like unneutered cat spray. I could smell it even through the catheter bag. These were all too familiar symptoms that I recognized immediately. I had a UTI.
I get UTIs fairly frequently because I am a catheter user. The ones I get are usually extremely painful and severe.
No Denying The UTI
As the day went on, I started having stabbing pain in my lower abdomen. The feeling like I needed to pee wouldn’t go away. Then I started to feel really cold but hot at the same time. I could immediately tell I had a fever.
Until then, I had been lying in bed with Jeff as we played online Monopoly.
“Jeff, I think I have a really bad UTI (urinary tract infection),” I told him. Feeling bad that I had to interrupt the sweet calmness of the moment of just relaxing in bed under the blankets with Jeff’s game system controllers and his laptop hooked up to my TV playing a fun game without really needing to worry about anything else.
He paused the game.
“How do you know that you have a UTI?” he asked.
I explained all my symptoms. He wanted to look up UTIs online (because Jeff was stubborn like that. Jeff needed proof). By then he agreed with me that I had a UTI.
“So, what do you do?” he asked.
“Well, I’m going to call Dr. Horf and let her know that I have a UTI. I’ll tell her that I can tell based on my symptoms. Hopefully, she can prescribe some antibiotics or something,” I said.
“Well, you better call them now, you don’t want the UTI to get worse,” he said.
Hypocritical Advice From Jeff
Jeff was always so worried about me taking my meds, getting to appointments, following the doctor’s advice. It was funny though when it came to his own healthcare, it was like pulling teeth to get him to take his meds. He always tried to get out of going to appointments. Rarely ever did he follow doctors’ advice. He didn’t know much about his own health history so I had to get information about it from his mom.
I had taken over his healthcare and kept all of his paperwork. In both of our phones, I had written up a list of his meds and typed up his health history. I also had the authorization to be the one to deal with his insurance company and his doctor’s offices. So, I couldn’t help but smile a little. Here he was urging me to seek more treatment. If the tables had been turned he would have put up a fight and refused to go to the doctor.
UTI Going Septic
Dr. Horf agreed with me that it sounded like a really bad UTI. She made an appointment for me the next day as an emergency visit.
I never made it to the emergency visit. As the day went on, my violent shivering and chills got worse and worse. My body was ice cold down to the core and just couldn’t warm up. I put all three comforters I had on the bed. Then I put a couple of fleece throw-blankets on top for good measure. As much as I hated to admit it, I already knew that the UTI was probably hitting my bloodstream.
“I can’t be under all of these blankets,” Jeff told me, “I’m sweating to death.”. He was indeed almost sopping wet with sweat. It was to the point where his clothes were drenched and my sheets were wet where he had been laying. Of course, Jeff always sweated a lot at night, but this was a bit over the top.
“I’m sorry,” I said, “but I’m so cold even with these ones on, my body can’t handle taking any of them off.”
Jeff looked at me lying there still violently shivering. My face was pale with really red cheeks, and there was sadness in my eyes.
“I’ll just sit in the spinny chair (black office chair) next to you instead.” Jeff decided.
“I don’t want you to leave,” I told him.
“I’m not,” he promised.
“Look, I’m moving the chair all of the way next to the bed and I can lean in on the bed and reach you.”
Swallowed By UTI Sepsis
I felt slightly comforted by that, but I was starting to get really dizzy and lightheaded. Everything was starting to seem very far away. In the distance, I sort of heard Jeff calling my name, but when I opened my mouth to respond I couldn’t get words to come out.
Then there was a deep blackness for a long time that kind of just swallowed me whole. I woke up to a room full of EMTs, paramedics, and firefighters. Jeff was sitting on the edge of the bed. He was holding my hand and telling me how much he loved me
“You can’t die on me, We need to spend our lives together,” he kept telling me.
Presenting to Paramedics for My Septic UTI
“What happened?” One of the paramedics asked me.
“I’m pretty sure I have a really bad UTI. All the sudden I just started getting chills and shivering. Right away I could tell that I had a fever. I can tell that it’s climbing. Then, while I was just playing Monopoly with my boyfriend I started to get really dizzy”. As I spoke my words were slurring. I started saying some random stuff about Superman and Batman. When I realized I was making no sense I caught myself and apologized.
“It’s ok, it’s the UTI, it messes with your brain too,” the paramedic explained to me as he felt my pulse. “Your pulse is in the 150s, that is way too fast, I think the UTI may have spread to your bloodstream and that you’ve gone septic on us.”
Jeff moved my IV pole so that it was in between the stretcher and my bed. Then handed me my G tube drainage bag to hold onto, before picking me up out of bed and carrying me over to the stretcher.
“Royal treatment, I see,” one of the firefighters said. He was helping the paramedics. In his arms he had all of my IVs, their pumps, the tube feeding bag and its pump. He was trying to hook them all on their flimsy collapsible IV pole.
“Only the royal treatment for my Becca,” Jeff told him.
In the Ambulance
While we were in the ambulance, they took my temperature, my blood pressure, and oxygen levels. When I saw the numbers, I knew they weren’t happy ones. They were confirming my suspicions that the UTI had hit my bloodstream and was now systemic.
The paramedic in the back with me immediately put me on oxygen. Then he hooked me up to the portable heart monitor. The heart monitor kept screaming out alarms because of my high heart rate. Even though I was laying down my normal heart rate was usually about 120 to 130. In the back of the ambulance, it was in the 160s to 170s.
They didn’t even bother trying to put in an IV in me. I already had a port running fluids. Besides, by now the two local ambulance companies knew me. They knew that I had no peripheral access left. My peripheral veins were all used up and scarred. Years of going in and out of the hospital since the age of ten will do that to you.
Sepsis Alert
I listened when the paramedic in the back with me called the report in to the hospital.
“We are inbound to your facility with a 26-year-old repeat two-six-year old whose chief complaint is possible UTI, we are calling this in as a sepsis alert. Repeat this is a sepsis alert. Vitals are as follows: rectal temp of 105.2, blood pressure of 77/43, oxygen level 82% ” on 3 Liters”
“Sepsis alert initiated, trauma room one on arrival”
“Copy that.”
A whole team of doctors, nurses, and aides were waiting for me when the paramedics rolled me in to the ER. They brought me right into the Trauma Room. A room reserved for the sickest of patients. They began working on me immediately. Like in the ambulance, their heart monitor would not stop beeping out notes of panic in response to my crashing vital signs.
Trauma Room One
I just couldn’t believe I was septic, this was bad news. Even though I had my Hello Kitty comforter with me (I owned 3 or 4 comforters) I was still shivering uncontrollably at the hospital.
“Can I have a heated blanket or at least another thick blanket?” I asked
“Your temperature is 105.5 and climbing, we may have to pack you with ice packs to get this fever down.
That thought horrified me. I felt like I was in Antarctica with just a bathing suit on. It felt like I had gone swimming in the frigid ocean waters in that bathing suit. Somehow the ice-cold Antarctica waters were getting inside my bones and organs. I knew these chills just came with the septic UTI game, but I hated it.
They placed a triple lumen IJ line in the Trauma Room. I was going to need so many antibiotics and so much IV medication that my port would not be enough. They did it with no sedation and the lidocaine didn’t really work. I could feel sharp pains as they advanced the wire. It went through my neck down into the main vein that empties into my heart. Then I felt intense pressure and just a really weird sensation as they advanced the catheter over it. By the time they were stitching it in place, I felt every single stitch.
Once the IJ line was in, they hung bags and bags of fluid. They also drew blood. They drew so much blood I wasn’t sure I’d have any left.
When they inserted the Foley Catheter I screamed in pain. I couldn’t help it. They took a urine sample from the catheter to test and see what particular bacteria was causing the UTI . That way they would know what antibiotics to use to treat it.
A Septic UTI Haze
The whole time I felt like I was fading in and out. One second, I was in the Trauma Room. I was aware of all the doctors and nurses and aides caring for me. The next second I was in bumpy darkness. Then I was viewing the world through foggy cloudy lenses, then I was forgetting where I was and getting disoriented. Moments later I was thinking about memories of other times I’d been critically ill. This would cause me to fall into a dreamlike state where the memory would play out in my head. I would be in the middle of the memory like it was happening to me. Then I would reach up to grab at stuff and my hand would just hit the air. Only then would I come to and realized I had just had some sort of half-awake dream.
They finally stabilized me in the Trauma Room and I was admitted to the ICU for a few days.
Visiting hours in the ICU were very strict. We told the hospital that Jeff was my husband. That way he could come to visit me at any time of day. He sat on the edge of the bed and stroked my back.
“You can’t die on me Becca,” he kept saying. Sometimes I saw tears in his eyes.
I was in a really sleepy, foggy state. Still, I sat the bed up and took the oxygen mask off. Then I puckered my lips, so he knew to lean in and kiss me. He got the cue and leaned in and kissed me until I was out of breath and the oxygen monitor started alarming that my levels were too low. I put the oxygen mask back on and went back into my foggy zone.
An Infectious Disease Consult
After four days in the ICU, the IV antibiotics for the septic UTI were kicking in. My fevers went down to only about 100 to 101 F. I no longer required IV Tylenol every 8 hours. The nasal cannula was all I required as far as oxygen. I didn’t need the mask anymore. The shivering and chills had almost completely stopped. I was transferred to a regular medical floor where the same infectious disease doctor followed me.
“You’re going to need to be on IV antibiotics for about three weeks once you go home to make sure we really get rid of this infection,” he informed me.
“How did my UTI go septic so fast?” I asked.
“Your UTI was probably left unnoticed and untreated for a while because you’re so used to pain that you didn’t really register the initial signs of it until it got severe. Then the infection that was sitting in your urethra and bladder leaked into your bloodstream, once it gets into your bloodstream and causes bacteremia (positive blood cultures showing bacteria in the bloodstream) it’s easy for it to turn into sepsis if it’s not treated quickly enough,” The doctor explained.
Going Home With a PICC Line
After two days on the general medical floor, I was able to go home. I still had my port in my chest and accessed 24/7. Now, I also had a double lumen PICC line in my arm. The PICC line was for the IV antibiotics that I would be on for the next three weeks. I didn’t have enough IV access otherwise. My port was a single lumen. I already used a Y-site splitter extension so that I could run my two separate IV bags at the same time.
I swore to myself that I would be extra careful from now on when catheterizing myself. My body couldn’t handle another close call with another septic UTI like that for a while. The thing was sometimes a UTI is just unavoidable in a patient using catheters.
