My TSS Story by Jessica Evans

TSS Jessica Evans

My name is Jessica Evans and this Thanksgiving marks my 14th year of survival from TSS due to tampons.

I was 17 years old when I became ill the day before Thanksgiving in 1999.

It started with nothing more than a fever and nausea. Assuming that I had contracted the flu I rested up and drank plenty of fluids. Within 24 hours I was vomiting and lethargic along with a strange rash on my hands and feet.

My mother was in Tennessee visiting my aunt for the holiday and I had stayed home with my step-father.  My step father is a physician and brought me into his clinic where they administered anti-emetics (to stop my vomiting which was almost constant at this point) and sent me home.

As hard as I tried to take my pills to bring my fever down and stop the vomiting I was unable to even get them into my mouth. The one time I succeeded in swallowing them I lost them within seconds. My fever that night was only 101. I was tucked into bed and left to sleep.

I woke in the night and was disoriented and wandered to the bathroom where I spent the night vomiting bile between periods of blacking out.  My step father checked me in the morning and I told him I was fine but still not feeling well ( I do not remember this conversation).

When he called me at noon to see if I felt better he said I should try to get some fluids down and he had left me juice in the kitchen downstairs. It must have taken me 30 minutes just to get down the stairs, I was so weak. I was found 45 minutes later, almost to the kitchen, on the floor and passed out.

I was brought into the hospital ER which was busy that day so I was placed in the hallway. Upon triage the nurse took my temperature and it was 106.7, only two days had passed since my temp of 101.

I was rushed into isolation, stripped of my clothes and bathed in ice. My grandmother (a nurse) sat by my side as they did test after test, no clue as to what was happening to me. After a lumbar puncture and an ultrasound it was deemed that had I been left down in the ER for 45 more minutes I would have been found dead. My kidney function was nonexistent. The swelling in my brain was so severe that I only remember bits and pieces of the next two weeks.

By the next day, despite treatment, I had gone into multi-organ failure. I was in respiratory failure and heart failure along with the kidney failure. I had severe encephalopathy from the fever and infection.

I was unable to even roll myself over to throw up in a pan so I just laid there and vomited on myself. I did not know who I was let alone who my family was. I was combative and swore excessively at the staff, my family and strangers who walked by my ICU room. I spoke to people who were not there and screamed about the pain that ran through my whole body. My skin had become dead and I peeled from my hands, my feet, my lips, the inside of my mouth and my tongue (I had no taste buds for 6 months).

Despite their best efforts and the many, many antibiotics the doctor’s had me on I declined even further. I cannot recall anything from this time. I am told that my entire family was called in to say their goodbyes. Eight days after I lost consciousness I woke up and my vitals began to stabilize.

It took nearly six days from the time I got sick for a diagnosis to be made. It was determined that I had a tear in my vaginal wall from using Super Plus tampons and that allowed the staph to enter my bloodstream.

After 11 days I was able to get up for the first time. I was 23 pounds lighter (87 pounds at 5’2″) and unable to stand on my own. I lost 25% of my hair and I had forgotten whole periods of my life.

Even after recovery I fight the lingering effects of TSS. I have reflux in my right kidney, chronic urinary tract infections, chronic fatigue and if I use tampons I show signs of infection within hours.

I have given birth to two children and both times I had complications due to the after effects of TSS. I have had a recurrence of sepsis from a kidney infection due to the reflux. 

I survived even when they told my family I wouldn’t. I survived despite the length of time it took them to realize how sick I was.

I am one of the lucky ones.

Comments

  1. That is an amazing story Jessica. I had no idea that was possible but with hearing your story it makes a lot of sense. I’m thankful that they were able to figure out what was going on with you and that despite the challenges you were able to become an amazing mother, wife, daughter and friend. Thank you for sharing your story. Sherry H

  2. My daughter Jessica is a TSS survivor. I thought I might be able to contribute from my perspective as a mother.
    It was Thanksgiving weekend 1999, and I had traveled to my sisters for a visit. Jessica (17) called me Friday morning and thought she was coming down with the flu, but said I did not need to return, she would be fine. Late in the afternoon I received a call letting me know Jessica had been found unconscious on the floor by my husband and he had taken her to our local hospital in rural Michigan. Her temperature was extremely high- over 105, she was delirious, and had very low blood pressure. They admitted her in septic shock to the ICU, and I drove the 650 miles through the night, terrified, praying that she would live. Initially they thought she was simply very dehydrated from the flu- we later realized she was just finishing a period, and had been using tampons.
    When I arrived at the hospital ICU, Jessica was able to open her eyes, smiled, and said she was happy I was there. This was the last clear thought she had for the next several days. At times she did not even recognize me.
    She was on full vasopressor IV support and barely had a blood pressure. She struggled to breathe and her heart rate was very rapid. She deteriorated very quickly and went into ARDS, renal failure and heart failure. They put in a central line, and explained I had to decide whether to air lift her to a major center or remain local. The infectious disease specialist said that survival chances were poor either way, and that they would likely have to place her on a ventilator. They still had not identified the cause, but did culture everything, which ultimately confirmed TSS.
    We were blessed, and Jessica survived.
    She spent 10 days in the ICU. Her skin completely sloughed multiple times, and her fingertips and toes were the worst affected. The swelling in her brain made her delirious and she suffered horrific nightmares and hallucinations. Her kidneys were badly damaged, and never fully recovered. Physical recovery was extremely slow, but we did get to bring her home before Christmas. She could barely walk.
    She remained weak for over a year, and had recurrent hospitalizations for kidney problems. She was unable to complete her senior year in school, and struggled with memory problems for many months.
    TSS was a relatively new entity in 1999, and diagnosis did not get recognized immediately. Awareness of the causes and symptoms of TSS is a critical piece of information for women of all ages. I appreciate the work being done to educate and raise awareness of this very preventable syndrome. My heart goes out to the many families who have lost their daughters.

  3. Thank you for sharing this Jessica! I have my own TSS story, but mine has a different set of circumstances. I’ve only shared my story with an extremely short list, mainly out of embarrassment and shame, but if it can help someone, I’m willing to put it out there.
    I was 15 when an acquaintance from school invited me to go to a party with her. Since I didn’t know her well I was a little nervous AND I had started my period that day, but decided to go. We ended up going with her much older boyfriend and his friend. His friend sat in the back seat by me and offered me a beer, and I was sipping it on the way just for the sake of fitting in. What no one told me was that this just a joke. They put a couple of hits of acid in my beer and I had no idea. I’d never done anything like that before. I remember feeling sick. And I remember being in a different vehicle. In the woods. Alone with this “man”. He was on top of me, trying to have sex with me. I honestly can’t say what happened after that. He dropped me off somewhere on Rochester Road and I made it home, completely horrified and confused. I went straight to the shower and slept the rest of that day and the next night. My body was still reeling from the effects of the drugs I was given and I felt I couldn’t tell my grandparents because I would get in trouble. I spent the next few days crying, weak and not feeling well in any way. I started running a fever and vomiting. I told my grandma I had the flu, so she let me stay in bed for a few days. In the midst of all this, I honestly forgot all about my period and the tampon I had used the weekend before. I thought I could smell something-HIM- on me, inside of me. At first I thought I could shower it away, taking 3 or 4 showers a day, even puking on myself in the process. My fever got worse. The last thing I remember was dragging myself downstairs and saying I didn’t feel right. It had been almost 2 weeks since everything happened. I woke up in the hospital. Turns out when he tried to rape me, the tampon was pushed high inside of me, high enough to where no string was detected and the infection was everywhere. With IV antibiotics I was able to recover quickly, and I had a D&C since the tissues in my cervix started to fuse with the tampon and caused major internal scarring. To this day I have never told my family the truth. What struck me about Jessica’s story is the problems I have with my kidneys now. I’m down to one functioning kidney and I have had multiple surgeries for kidney stones and multiple renal infections.
    Thank you so much for sharing this with us, Jessica. It’s time we discuss these life saving issues openly as women!

    • Leanne Strong says:

      You should tell them the truth, even if it means getting in trouble. It’s better to just be honest about it and get in trouble than to keep it secret.

  4. Jennifer you are so brave for posting this! You are such a wonderful person and I am so sad to hear that this happened to you and that it resulted in you getting TSS. Telling those closest to us is the hardest. For what it’s worth I am very proud of you for sharing your story. Lots of love!

  5. This must’ve been hard for you! I’ve never had TSS, but I have had a couple of times where I have thought I had it! It’s scary thinking you have it, but I’d imagine it’s even scarier when you actually do have it! I do have one question. Why did you even use super plus tampons, anywho? Was that the size you needed for that day?

    • When I was a teenager I had extremely heave periods so the only tampon absorbency that worked was Super Plus. Like most teenage girls I was very active and gave up pads for the comfort of tampons. Unfortunately I had no idea that these are most likely to cause TSS.

  6. Hi,
    so sorry to hear about your experience. That is so scary!
    My 16year old daughter just went through toxic shock syndrome. Luckily, we caught it early enough that although she was in ICU for 4days, she did not have organ failure.
    It has been almost two months, and she is having a very difficult recovery. She has a constant severe headache, and has panic attack type symptoms. She is also unable to attend school, as iit is very difficult ansd stressful for her to concentrate. am just wondering if you experienced some of the same symptoms during your recovery?
    Thanks for your thoughts and for sharing your story!

    • Leanne Strong says:

      What were your daughter’s symptoms, Linda?

    • My recovery lasted over a year and I still, 14 years later, experience memory loss and symptoms of PTSD that is brought on anytime I am ill. I never did go back to school full time due to exhaustion and finished a GED instead. I hope your daughter recovers fully and does not have any long lasting effects. I understand how hard it can be, especially when few people understand what it is like to experience TSS.

  7. Leanne Strong says:

    Fever of 106.7! That’s scary anyway! TSS or not, that is dangerous! 101, I can see how you can chalk that up to a virus, but 106.7?! I might even go seek attention for a fever of 102 or 103!

    • My temperature was 101 and spiked within 2 hours while I was home alone and disoriented. These are the dangers of TSS. It masks itself as something as innocuous as the flu and then rears it’s ugly head when it is almost too late. This is why it is so important for people to understand the symptoms of TSS.

      • Leanne Strong says:

        Yeah. That’s what I was saying. 101 is a normal fever for most people. I can see how you can think that’s just from the flu or another simple little bug.

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