What’s a Septic UTI Like For Me

Septic Urinary Tract Infections or Septic UTIs are not fun for everyone. Most people will get a couple of UTIs over their lifespan. I however am a catheter user, which means I get a UTI almost once every two months. Often times they go septic and spread to my bloodstream, becoming a life-threatening medical emergency. A septic UTI goes beyond what most normal people experience, they are excruciatingly painful, like being stabbed up the urethra by a knife, and they cause high fevers. If not treated rapidly enough they become lethal.

I never know when I am going to get one either. Back in October of 2016, Jeff and I were just going about our normal routine.

Our Lunchtime Routine

Jeff came back from lunch at the main building of Side by Side and would help transfer me into my wheelchair and put my purse on the back of it along with all of my tube feeding and IV fluids and their pumps. Then Jeff pushed me down the street to the corner store.

He bought candy and chips or subs. he never ate much for lunch at Side By Side. He didn’t like Terri’s cooking and would just take a few bites and leave the rest. Terri hated him for that. Jeff was always ordering out Chinese food or getting subs from the corner store instead of eating her food. Other times 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.

A Septic UTI Brewing Inside Me

 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.  Instead of racing my little racer driver in my car down the road, I would smash it into every possible obstacle. That day I could have blamed it on the Septic UTI brewing inside of me, but other days I had to come up with other excuses.

Once I got tired of losing the game, we changed gears. Jeff took out his remote-control car. This remote control car was a work of art that Jeff put hours and hours of work into. He had 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 YouTube video or one diagram online or in a little kit.

Going Through Nighttime Routine With a Septic UTI Under the Surface

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 the computer he would always swear loudly, turn bright red, and worked himself up with frustration. Eventually, he always figured it out and went back to “serious concentration Jeff mode”.

Right before Melody or Lauren were due to come back for the nighttime routine. We would get in bed and cuddle together, and I would read him some of my writing.

“Some day you’re going to be a bestselling author,” he used to tell me.

He also used to beg me to write about him. I only wish I’d done it sooner.

Wrapping Up the Nighttime Routine

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 at the same time as I pushed my IV meds through.

 I was on 3 L of oxygen at all times now. Jeff always double-checked the concentrator to make sure it was on the right setting and that it was working right before we went to bed.  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

The Urgency and Severe Agony of a Septic UTI

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. That feeling of urgency was my first tip-off that I might have the beginnings of a UTI. When I get a UTI it turns into a septic UTI very easily because I am so immunocompromised.

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 badly once I got over the sharpness.  Following that would be the dizziness and the feeling that I was chilled down to the bone as my fever rose to crazy high temperatures, That was what made me know for sure that I had a septic UTI

No Denying This Septic UTI

The second Monday in October of 2016, I must have tried to straight catheterize myself about ten times. Every time I did less than 25 ml came out. Excruciating pain resulted, and 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. Then there was the chills starting up. There was no other explanation besides having a septic UTI

As the day went on, I started having stabbing pain in my lower abdomen. The feeling of needing 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. This was more than a regular UTI, this was a severe septic UTI.

Until then, I had been lying in bed with Jeff as we played online Monopoly.

“Jeff, I think I have a septic UTI,” I told him. Feeling bad that I had to interrupt the sweet calmness of the moment. We had just been 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 your UTI went septic?” he asked.

I explained all my symptoms. He wanted to look up “UTI” and “sepsis” online because Jeff was stubborn like that. Jeff needed proof.  By then he agreed with me that I had a sepitc UTI.

The Action Plan For the Septic UTI

“So, what do you do?” he asked.

“ I’m going to call Dr. Horf and let her know that I have a septic 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 to get any sicker,” he said.

Jeff was always so worried about me taking my meds, getting to appointments, and 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.

Jeff’s Hypocrisy

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.

Dr. Horf agreed with me that it sounded like a really bad UTI and that it could turn into a septic UTI if we weren’t careful. She made an appointment for me the next day as an emergency visit.

Worsening Symptoms

I never made it to the emergency visit with my doctor.  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 covered myself with all four comforters I owned. Then I put a couple of fleece throw blankets on top for good measure. I knew Dr. Horf had been wrong I knew the UTI wasn’t going to possibly turn septic if we weren’t careful, As much as I hated to admit it, I knew that I already had a septic UTI.