‘I Almost Died From Toxic Shock Syndrome And It Had Nothing To Do With A Tampon’
On July 24, 2018, I needed a break from being mommy to my 5-year-old son Kao. So, I went to the nail salon to get a pedicure and unwind. When the nail technician got to my left foot, she went too hard with the nail file and accidentally cut my big toe. It started bleeding everywhere.
Because I live with type I diabetes, I’m actually more prone to calluses and foot injuries due to poor circulation. I thought to myself, Darn, it probably won’t heal well—that’s not good. But otherwise I didn’t worry about the injury at all. These things happen! We wiped off my toe, wrapped it up, and let it dry. Then, the nail technician painted my toenails and that was that.
When I got home, my toe started to turn red and swell up. By the next morning, it had blown up to nearly double its size. My husband Kurt and I freaked out.
Video: Is it bad to leave a tampon in too long?
As a former nurse, I knew I likely had a serious infection, so we hopped in the car and drove straight to the hospital.
In the emergency room, the medical team ran a blood test and used a cotton swab to get a sample from the wound on my toe. It would take a day or two to get back the results of the bacteria culture test to figure out exactly what was at the root of my infection. However, my white blood cell count was up, which meant my body was indeed fighting a major intruder. I was put on a strong antibiotic and sent home on IV therapy. They said to come back if it got any worse.
When I asked them what “worse” meant, they told me to come back if my toe turned...black. And that night, it did. My temperature also skyrocketed to almost 106 degrees Fahrenheit. My fever was so bad that I was shaking and my teeth were chattering. I had terrible brain fog and, naturally, was totally panicked. We hurried back to the hospital.
A post shared by KP (@kidneykandy) on Jul 27, 2018 at 3:38pm PDT
Two days after my pedicure, I had to have my toe amputated.
Upon our arrival at the hospital, the medical team called in a specialist, who determined that the infection had moved to my bone, and I’d need to have my toe amputated. I had the surgery to remove it that night. I was given more antibiotics via IV and left the hospital to recover at home the following day.
As my foot healed, I tried to get on with my life the best I could and continued to receive IV antibiotics to fight the infection. Unfortunately, a few weeks into my recovery, my health took a turn for the worse. I noticed that I was swelling all over my body. My back hurt really badly, and it was hard to pee. Only a little dribble came out when I tried to go, and it was the color of cola.
A post shared by KP (@kidneykandy) on Aug 7, 2018 at 8:32am PDT
By this point, it was mid-September, and we went back to the hospital where the medical team ran more tests. A creatinine serum test showed that my creatinine levels were high. Creatinine is a waste product typically filtered out of the blood by your kidneys; because I had lots of it in my blood, this was a sign that my kidneys weren’t functioning optimally. I was readmitted into the hospital that day.
As the weeks went on, my creatinine levels continued to go up, and it became clear that my kidneys were failing. But the medical team didn’t know why. They did biopsies and found no kidney damage, but the tube-like cells that helped filter my blood when it passed through my kidneys were damaged. I had what’s known as acute tubular necrosis (ATN), one of the most common causes of kidney failure.
A post shared by KP (@kidneykandy) on Sep 28, 2018 at 10:24am PDT
Still, the medical team couldn’t figure out why my kidneys were failing, so they continued to monitor me and run tests. In most cases of ATN, your kidneys can recover with the help of dialysis to remove excess waste from your body. But my kidney function continued to worsen. I started to become really bloated, and then I completely stopped peeing. Even with the help of a catheter, I couldn’t get anything out.
Because I was having such severe and mysterious symptoms, the doctor went back to basics and asked if it was okay for him to do full-body exam to make sure we weren't missing any physical, external clues that could help lead to a proper diagnosis. I was fine with it, and we realized I had red rashes all over my body. Even stranger, my skin was peeling in my ears and inside my belly button—a clue that finally made all of the puzzle pieces fit into place. “Holy crap. You have toxic shock syndrome,” I remember him saying.
A post shared by KP (@kidneykandy) on Apr 29, 2020 at 1:09pm PDT
Three months after my toe injury, on October 24, 2018, I was officially diagnosed with toxic shock syndrome (TSS).
As my doctor explained, TSS is a complication that can develop after you contract particular bacterial infections, most commonly from strains of Staphylococcus aureus or what's known as Group A Streptococcus. And how did those bacteria get in and wreak havoc? The cut from my pedicure.
Once I contracted the infection, the bacteria released toxins into my bloodstream. From there, they spread to my organs and started doing serious damage, like causing my kidneys to start failing. It made perfect sense, my doctor said; they just hadn’t been looking for TSS because it’s *so* incredibly rare (we're talking 1 to 3 people per 100,000 in the U.S. develop it).
When I researched TSS more, I learned that there are other cases like mine—we just don’t talk about them as much. Toxic shock syndrome is usually talked about in the context of using super-absorbent tampons and leaving them in too long (and of course, that’s the first thing I found when I Googled it). That's because super-absorbent tampons have been linked to the infection, given that it makes it easier for bacteria to grow when left in too long, and in turn, that can lead to the development of this life-threatening complication.
But you can also develop TSS after contracting one of these particular bacterial infections through a skin wound (*raises hand*), getting an infection after surgery, and more. The tampon factor is arguably a pretty misunderstood piece of the TSS puzzle (and, btw, tampons are perfectly safe with proper use!).
A post shared by KP (@kidneykandy) on Nov 14, 2018 at 12:26pm PST
To be honest, life is hard and pretty exhausting right now. But if I’ve learned anything from this experience, it’s to never give up.
After my diagnosis, I was immediately put on dialysis three times a week. By then, we knew that my kidneys were not going to get better, so my name was added to a kidney transplant list. I’ve been on dialysis for two years now, and each session lasts about four hours. They cycle out all of the blood from my body, wash it with a special filter, and put it back in. It’s a huge process to go through.
I also get lots of migraines, have to deal with nausea and vomiting, and spend a lot of time sleeping and crying. But every day I remind myself that I have to keep fighting for my little boy and my husband.
A post shared by KP (@kidneykandy) on Aug 5, 2020 at 9:50am PDT
While this was a rare and freaky occurrence, it also could have been prevented. As someone living with diabetes, I knew that getting someone to work on my feet was risky because I’m at a much higher risk of having a serious foot infection. But I never expected that I would lose a toe and go into kidney failure just because I was trying to take a breather in order to be a better mom and wife.
I know how wild and rare my story is. Not every random cut is going to lead to some nightmarish health situation, and that's not my takeaway. Instead, I've learned that you should always be your own advocate when it comes to your health, and if you know something’s wrong, persist until you get the help that you need.
As a former nurse, I’m stubborn. At first, I thought, Oh no, I’ll be fine, I can go home. But looking back, I wish I’d stayed in the hospital and demanded more answers from the very beginning.
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