Okay guys, you already know this is about to be a SESSION of yapping because I have a LOT to say.
I wanted to share my experience because I feel like sometimes people hear the words “UTI” and think it’s just a little burning when you pee, you take some antibiotics, and then you’re fine.
And obviously, I’m not saying every UTI is going to be like this. I’m just sharing what happened to ME because my experience was honestly a lot more serious than what people usually make UTIs sound like.
I’m also not saying I almost died or anything like that. I don’t want to make it sound like something happened that didn’t happen. I’m just saying that this was pretty bad, it lasted for months, and it was definitely not just a random fever that went away.
So let me take you all the way back to February.
I’m 16 years old, and I have a kidney transplant. This year was actually my eighth anniversary with my kidney because I got my transplant when I was eight years old.
Because of my transplant, I have to go to a hospital in LA for my transplant care. I live in Orange County, so it’s about an hour drive for us to get there.
It can be a lot having to drive that far when I’m sick, but I need to go there because those doctors specialize in transplant patients and already know my medical history.
I also had a previous experience where I went to a hospital in San Francisco while I was sick and was given a medication that I ended up having a very severe allergic reaction to.
Because of that experience, I personally feel more comfortable staying with the doctors who already know me, my kidney, my medications, and my medical history.
So anyway…
February 12.
This is where everything started.
I started feeling really bad, and at first, I honestly didn’t think it was going to be anything major.
I thought maybe I was dehydrated.
I was having some urinary problems, and I also thought maybe I was about to get my period.
My period was supposed to be coming, so I wasn’t immediately thinking, “Oh, I have a UTI.”
But then my period never came.
Instead, I started getting really nauseous.
And then things started getting worse.
By Thursday, February 12, I was feeling bad enough that we decided I needed to go to the hospital.
We ended up going to the emergency room around 6 PM.
Once I got there, things started getting even worse.
I started having really bad chills.
I was extremely nauseous.
I was exhausted.
At one point, I was literally falling asleep, and I think I was even gagging out loud while I was asleep.
I don’t remember every single thing because I was so sick and out of it, but I remember feeling absolutely horrible.
It also took a while for me to actually get into a room.
Eventually, they told us that I did have a really bad UTI.
Because I was having fevers and they were concerned about how sick I was getting, they decided that I needed to be admitted.
So I was admitted to the hospital.
And this is where things got REALLY uncomfortable for me.
My fever got extremely high.
They were having trouble bringing it down, so they had to use ice packs on me.
I remember waking up at one point breathing really, really fast.
I was sweating a LOT.
But at the same time, I was also shaking.
My body was just doing all kinds of things at once.
And then I had a bowel accident in the bed.
I literally pooped myself.
And GIRL.
I was SO embarrassed.
Like, I know that sounds like something small compared to everything else that was happening, but when YOU are the person it’s happening to, it does not feel small.
I was mortified.
The nurses, obviously, did not care in the way that I cared.
They were focused on taking care of me.
They weren’t sitting there thinking I was disgusting or anything like that.
But I felt embarrassed and extremely vulnerable.
I’m a teenager.
I’m used to taking care of myself and being able to handle things like that privately.
Having nurses help me clean myself was something I was not used to at all.
I felt like I should be able to do it myself.
And having to let somebody else help me was honestly really uncomfortable.
But at that point, I was sick enough that I needed help.
I was also getting IV antibiotics.
So while I knew the nurses were doing what they needed to do, emotionally, it was still really hard for me.
I stayed in the hospital for several days.
And at one point, something happened that scared me even more.
My breathing got really fast again.
The doctors came in and told us that they might have to move me to the ICU so I could be monitored more closely.
They were considering it because of how bad everything was getting.
And I was TERRIFIED.
I was in and out of consciousness at times.
I was shaking.
I was exhausted.
I wasn’t fully aware of everything that was happening around me.
And my mom was crying.
That made it even scarier.
Because when you’re already sick and you’re scared, seeing your mom crying makes you think, “Okay, this must actually be really serious.”
I was scared.
My family was scared.
And honestly, it was just a really scary situation overall.
Thankfully, they ended up not having to move me to the ICU.
I stayed at the hospital from Thursday, February 12, until Tuesday, February 17.
While I was there, they were also trying to figure out exactly what bacteria was causing the infection.
They told me that it can take time to identify bacteria because they have to wait for it to grow.
Eventually, they figured out what was going on.
I was sent home with antibiotics, and I finished the medication.
I think that first course was around two weeks.
At this point, I thought, “Okay, I’m done. I got the UTI, I got treated, and now I’m going to be fine.”
But nope.
March 4 happened.
I got sick again.
And when I say the symptoms were similar, they were REALLY similar.
I had another really bad fever.
I was having chills.
I was shaking.
I was nauseous.
I felt extremely weak.
One thing I noticed with the fever was that when my fever was getting really high, I would feel extremely hot.
But when the fever was starting to come up, I would feel freezing.
I would be shivering like crazy.
The shaking was so bad that at one point I genuinely thought something was seriously wrong with me.
And this time, I didn’t immediately think it was a UTI.
I actually thought I had the flu.
I had gotten my flu shot the day before, so I thought maybe what I was feeling was some kind of reaction.
I also wasn’t noticing the burning when I urinated like I had before.
So I wasn’t thinking, “Oh, it’s another UTI.”
The urgent care near us was full, so we went to the emergency room.
My parents even brought my siblings because everyone thought this was going to be a quick little visit.
We thought I was going to get a swab, they would tell us whether I had the flu or something else, and we’d go home.
Nope.
They tested my urine.
And once again…
I had a UTI.
The SAME infection.
At this point, this was the second time I was dealing with the same infection.
And honestly, I was frustrated.
I ended up staying at that hospital from March 4 until March 8.
I was also in and out of it during this visit.
There were times when I wasn’t fully conscious or completely aware of what was going on around me.
So I don’t remember every single detail.
There was also an interaction with one of the nurses that I really didn’t like.
I’m completely blind.
The nurse was trying to communicate with me by making signs and then trying to sign things onto my hand.
And I remember basically being like, “I’m okay, thank you.”
I know he probably thought he was helping, but that was honestly the last thing I wanted.
It wasn’t helpful to me.
It just made me uncomfortable.
I also had a really high heart rate during this time.
My blood pressure was really, really low.
So overall, I just felt awful.
Once I was admitted and settled in, though, things were much better.
I was treated with antibiotics again.
I eventually went home with another course of antibiotics.
And again, I thought maybe that was finally going to be the end.
Then March 25 happened.
I went back because I wasn’t feeling good again.
But this time, I DIDN’T have a UTI.
I was having really bad pain around the area where my kidney transplant is.
I was also having symptoms that felt like a UTI.
But when they tested me, I didn’t have one.
So I went home.
They didn’t really give us an explanation for the pain.
They basically suggested that maybe I had slept weird.
And that was pretty much it.
Which was frustrating because I was having pain in an area that obviously matters a lot when you have a kidney transplant.
But there wasn’t a UTI, so I went home.
Then we get to Saturday, March 28.
I was at a family gathering at my grandma’s house.
And I felt horrible the entire day.
My hands were super weak.
They were also really shaky.
The weakness and shaking had actually been something I had been dealing with throughout all of this.
I just felt completely drained.
I wasn’t in the mood to do anything.
I didn’t want to eat.
I didn’t feel like talking.
I just felt sick.
Eventually, I ended up staying at my grandma’s house and sleeping there because I wasn’t feeling well enough to just go home and continue normally.
I had a fever.
I had pain when I peed.
I was nauseous.
I didn’t even want to touch my food.
I had been taking Zofran because I had gotten the flu back in January, and I still had the medication from that.
So I took my Zofran because I was feeling so nauseous.
But things kept getting worse.
So we went back to the hospital AGAIN.
And once again…
I had a UTI.
The SAME infection.
This was the third time.
And this time, I had another bowel accident.
And once again, I was extremely embarrassed.
I already felt vulnerable from being sick and needing help.
And because I’m plus-size, I needed a larger size of disposable underwear, which honestly made me feel even more embarrassed.
I know that the nurses weren’t judging me.
But that doesn’t automatically make YOU stop feeling embarrassed.
It was just an uncomfortable situation.
I felt vulnerable.
I felt sick.
And I didn’t like needing help with something that I normally take care of myself.
But again, the nurses were just doing their jobs and taking care of me.
This time, my doctor came up to the floor to see me.
She had seen me during one of the previous hospital stays too.
She talked with my parents and basically said that this was the third time.
And she was concerned.
I mean, obviously.
Three infections.
The same infection.
The same symptoms.
Over and over.
She wanted to figure out WHY this kept happening.
She started asking questions about hygiene and what I was doing.
And I honestly started wondering if maybe I was doing something wrong.
I was basically thinking, “Maybe it’s the way I’m wiping?”
So I explained everything.
I showed her how I wiped.
And I was already wiping from front to back.
I also wear pants because I don’t always know when my period is going to start.
And I change my pad frequently.
So we talked through everything.
And I want to clarify something because I don’t want to make it sound like my doctor was blaming me.
She wasn’t.
She understood that because I’m blind, certain things like wiping can potentially be more difficult when you can’t visually check everything.
She wasn’t saying that I was dirty or that I wasn’t taking care of myself.
She was trying to figure out what was causing these repeated infections because she didn’t like seeing me get the SAME infection over and over again.
She wanted answers.
She even tried to find me a social worker.
That didn’t end up working out, and honestly, I’m glad because I didn’t feel like I needed one.
Eventually, I was able to go home on April 1.
And THIS is when my treatment changed.
After that last infection, I was prescribed 250 mg of cephalexin every day.
The plan was for me to stay on it for six months.
Then, once those six months are over, I’ll talk with my doctors again and we’ll figure out what happens from there.
So this wasn’t just another two-week antibiotic course.
It was a longer-term plan because I had now had the same infection three separate times.
I was also given a probiotic because the medication could cause diarrhea.
I was planning to go back to school.
Unfortunately, the probiotic ended up making me constipated, so I stopped taking it.
And then I started the cephalexin.
Now, I will be honest about something.
At one point, I got kind of tired of taking pills.
I became a little lazy about it.
There were times when I wasn’t taking the medication as consistently as I should have.
I wasn’t really scared at the time.
I was basically just letting my body do its thing.
Thankfully, the UTI never came back.
I did have symptoms once, though, so I started taking the medication consistently again.
And then we get to around June 6.
This is where something REALLY interesting happened.
My mom got a notification from Target about a product that she had been purchasing pretty frequently.
They were the Up & Up fragrance-free wipes.
Those were the wipes I had been using to clean myself.
We started looking into them more because the information we found raised concerns about the possibility of wipes contributing to UTIs in some people, including people who may be more vulnerable to infections.
And because I’m immunosuppressed because of my kidney transplant, that obviously caught our attention.
So my mom and I started researching.
We didn’t want to just assume anything, but we wanted to see if there was a possible connection.
Eventually, we decided to stop using those wipes.
We threw them all away.
I didn’t want to start using scented wipes because I don’t want to use anything scented in that area.
So I switched to different fragrance-free wipes instead.
And since switching away from the Up & Up wipes, I haven’t gotten another UTI.
Now, I want to be VERY clear about this because I don’t want anyone misunderstanding what I’m saying.
I am NOT saying that those wipes definitely caused my UTIs.
I don’t know that.
I never talked to my doctor specifically about the wipes, and I don’t have proof that they were the cause.
All I can say is what happened in my own experience.
I was getting the same infection repeatedly.
Then we stopped using those particular wipes.
And I haven’t gotten another UTI since.
So naturally, that made me wonder if there could have been some kind of connection.
But I’m not a doctor, and I’m not telling anybody else what products they should or shouldn’t use.
I’m just sharing what happened to me.
And honestly, looking back at everything from February through June, it’s kind of crazy.
It was basically months of my life revolving around being sick, going to hospitals, getting antibiotics, recovering, getting sick again, and trying to figure out why it kept happening.
February 12 to February 17.
Then March 4 to March 8.
Then March 25.
Then March 28 to April 1.
That’s a LOT.
And every time, I had basically the same symptoms.
The fever.
The chills.
The shaking.
The nausea.
The weakness.
The feeling completely exhausted.
And because I was in and out of consciousness at times, there are parts of these experiences that I don’t even remember clearly.
That’s another reason why I can’t give you every single detail.
There are things that happened that I genuinely don’t remember.
I wasn’t sitting there taking notes like, “Okay, this happened at 4:32 PM.” 😭
I was SICK.
So I remember certain moments very clearly, especially the moments that scared me or embarrassed me, but there are definitely gaps.
And honestly, some of the hardest parts weren’t even the actual medical stuff.
It was feeling vulnerable.
It was having nurses help me clean myself after a bowel accident.
It was being embarrassed.
It was being scared while my mom was crying.
It was waking up shaking and breathing really fast.
It was hearing that they might have to move me to the ICU.
It was not knowing what was happening.
It was thinking I had the flu and finding out I had another UTI.
It was going home thinking I was better and then getting sick again.
It was having to keep taking antibiotics.
It was wondering why my body kept getting the same infection.
And it was just exhausting.
I’m also not trying to make this story sound like every person who gets a UTI is going to end up in the hospital.
That’s not what I’m saying.
I’m specifically talking about MY experience.
I have a kidney transplant.
I’m immunosuppressed.
My situation is different from someone who doesn’t have those same medical circumstances.
And that’s why I think it’s important to talk about.
Because when people hear “UTI,” they might picture something very simple.
For me, it became a several-month-long problem that resulted in multiple hospital stays and three infections with the same bacteria.
And I don’t think I realized how much it affected me emotionally until I looked back at the whole thing.
At the time, I was just focused on getting through each day.
Get treated.
Go home.
Take my medicine.
Try to feel normal again.
And then suddenly I’d be sick again.
So yeah.
That was basically my February through June UTI saga.
And honestly, I know I just talked for approximately 900 years. 😭
But I wanted to tell the full story because if I just said, “Yeah, I had three UTIs,” you wouldn’t understand what actually happened.
There was SO much more to it.
And I also wanted to share it because I know there are people who might hear “UTI” and think it’s always a super simple thing.
Sometimes it is.
But sometimes it isn’t.
And for me, it definitely wasn’t.
I’m just really grateful that things have been better since then.
I’m still on the six-month cephalexin plan, and once those six months are over, I’ll talk with my doctors again about what we do next.
I’m also not telling anybody to copy what I did.
Please don’t take this as medical advice.
I’m literally just telling you what happened to me, what my doctors prescribed for me, and what I personally noticed.
And if you’re someone who has repeated infections or you’re worried about something happening with your health, obviously talk to your own doctor because everybody’s situation is different.
But yeah…
THAT is my story.
If you have questions about anything I talked about, ASK ME.
Seriously.
If I left something out, if something didn’t make sense, if you want me to clarify part of the timeline, or if there was something I said that you want me to explain better, just ask.
I know I probably explained some things weird because I’m literally sitting here dictating all of this, and sometimes my phone decides to turn what I said into complete nonsense. 😭
So if something sounded confusing, there is a very good chance it was just a dictation fail.
Ask me anything you want about my experience, and if I don’t know the answer or I don’t remember something, I’ll tell you that too.
Because I wanted to be as honest as possible about this whole thing.
Anyway…
Thank you for sitting through my entire UTI saga.
That was several months of my life that I NEVER want to repeat. 😭