Join me as I welcome back Amy and her daughter, Lizzie, for an insightful discussion. In this episode, we delve into Lizzie's harrowing encounter with toxic shock syndrome (TSS), exploring the severe implications and her journey to recovery. Amy shares the critical moments that led to her life-saving discovery of Lizzie's condition and her quick response. We also discuss Lizzie's candid reflections on managing her menstrual health post-TSS, the challenges she faced during her recovery, and the significant changes in her life post-illness, including the recommendation to avoid tampon use. This episode serves as an eye-opener on the crucial aspects of TSS and menstrual health awareness.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video on YouTube: https://youtu.be/F_rYxdV3Qwc
[00:00:00] Amy: She was in a room by herself and I was in there with her and I was praying because her temperature just kept going up. And I just knew she is a sick girl. And as I was praying, something came into my mind: the words take her tampon out. And I thought, am I imagining this? Like, why am I thinking of a tampon? He opened the door and yelled to the nurses, we have a toxic shock patient.
[00:00:29] Carole: That was Amy Nichols, who I interviewed along with her daughter Lizzie on the last episode of Wisdom Shared where we talked about Matthew, who has a diagnosis of autism, and we learned about how food dyes affected his behavior.
Well, today's story focuses on his sister Lizzie's near-death experience. I explained on the last episode how I bumped into Amy and Lizzie sunbathing on a driveway. But what I didn't tell you is that Lizzie shared with me a bit about her struggle with something that sounded to me like Long Covid, but no, Lizzie was describing the long-term effects from toxic shock syndrome or TSS, which she acquired back in high school. She's now a college student studying to be a physician assistant.
[00:01:13] Lizzie: He said to me with the most terrifying stare I've ever gotten from a doctor that I cannot use a tampon again or I very much could die. So that was very scary and hard to hear because I had struggled with heavy periods my entire life.
[00:01:30] Carole: Welcome to Wisdom Shared, where parents, their kids, and people on the front lines are the experts, and where connection inspires change. I am your host, Carole Blueweiss. Hearing Lizzie's story takes me back to my own teenage years in the 1980s, when the media was reporting daily about new cases of TSS. I remember feeling terrified of this illness that was causing people like me to become mysteriously sick. A research task force finally found that Rely tampons was the cause of the outbreak, and once they were taken off the shelves, cases went down. Today, it's considered to be rare. Let's listen to Lizzie's story and how Amy literally saved her daughter's life.
[00:02:13] Amy: So I told my husband, we've just got to get her to the hospital. And my husband - she's 6'1, my husband's 6'4 - he carried her out of the door like a baby. She was so limp and so sick. We got her to the emergency room. It was right at the beginning of the fall of 2020 when Covid was just coming about.
[00:02:35] Carole: When did you realize that she was so sick that she needed to go to the emergency room?
[00:02:39] Amy: She went to the bathroom and I was downstairs doing something and I heard her fall and I realized that she had fainted and she'd never fainted before. So that was very scary to me. And her face was bright red, like the worst sunburn you could ever imagine. And a rash on her belly. She was vomiting, she had a very high fever. So when we got her to the emergency room, she could hardly sit up in the wheelchair. They were trying to ask her questions about our insurance and all of this.
And I was, just wanted to scream, get her into a room. Like she's going to fall out of this wheelchair. And of course, everyone was super nervous about Covid. So they didn't want to get too close to her because we didn't know the ins and outs of Covid at that point. So they said, sure enough, you know, we think she has Covid and they were getting ready to do the Covid swab on her.
She was in a room by herself and I was in there with her and I was praying because her temperature just kept going up and I just knew she is a sick girl. And as I was praying, something came into my mind: the words take her tampon out. And I thought, am I imagining this? Like, why am I thinking of a tampon?
So, I still can see it in my eyes. I looked down, she's lying on this bed in the emergency room, lifeless. And I said, Lizzie, do you have a tampon in? She couldn't even talk to me. She just looked at me like, what? I said, do you have a tampon in? No answer. So I literally, sorry to be graphic, spread her legs and sure enough, I immediately could see all this awful discharge that was like black and green.
My heart dropped and there was a tampon covered in just awful discharge. So I ripped it out and just as I'm taking it out, the emergency room doctor comes in and he's young. I would say mid to late twenties. The look on his face, he looked at me and I looked at him and he opened the door and he yelled to the nurses, we have a toxic shock patient.
And from that moment on, oh my goodness, we had people running in and out of the room, hooking her up to everything imaginable. And that's when they started yelling. So I knew, wow, this is bad. So I stayed out in the hallway and that doctor, sweet, sweet doctor, he was so nervous. He came out and he told me, he said, I've never had to tell anyone this. But I don't know that your daughter's going to make it. We need to transport her to the bigger hospital on 86th Street. And I can't promise you she'll make it there. Her blood pressure is dropping so quickly.
They brought this team in and I thought they were going to fly her down. It's only a couple miles. They're called the transport team. I immediately thought that meant helicopter, but they transported her by ambulance. They took the best care of her and got her down to the next hospital. And when we got there, that doctor then came out, told me the same thing. They had no idea if she would live. Again, I was out there praying my rosary cause I'm a very devout Catholic.
And she said, I'm going to put a PICC line in her neck because we've got to get some antibiotics in her immediately. And just that procedure itself, she could die. Are you okay with me doing it? She said, but if I don't do it, she will die. And I said, I want you to do whatever you know is best. And she said, okay, you keep praying and I'll be the doctor.
So she went in and then I didn't see Lizzie for a couple of hours. And when I came in to see her, she was already showing signs of life. Antibiotics were kicking in and she slowly got better. It was quite a miracle. They just kept telling me the first 24 hours are critical. We don't know if she'll make it through the first 24 hours, but if she does, then that's a really good sign that her organs are going to come back because her organs were all shutting down.
And we had the priest come in and do the last rites over her and it was awful, but here she is. Here she is. She is our little miracle.
[00:06:39] Carole: What parts of that, Lizzie, do you remember?
[00:06:42] Lizzie: Not much, I won't lie. I remember being super sick, but I think at that point I'd been vomiting so much, I was so dehydrated. I don't think I used the restroom at all. And I think that was the killer that didn't let me realize I still had a tampon in because I remember I was on my period completely normal before then and then all of a sudden, I just got super super sick. And I fainted and I really do not remember much. It's so weird. It was like a complete fever dream that I was in.
When I really think back to it, I remember maybe 30 minutes of just staring at the wall in my room, but I don't remember much after that. I know when my dad was trying to carry me out, I remember sitting up and being like, oh no, I can walk and just falling straight back on my bed and being like, yeah, I can't move.
[00:07:29] Carole: You mentioned that this changed your life. What do you mean by that?
[00:07:34] Lizzie: So many things. I remember being in the hospital and the doctor's telling me, okay, so with toxic shock, almost all of your top layer skin will peel off. And I remember sitting there thinking, oh my gosh, that's not true. That's not going to happen to me. And they're like, we don't know if it'll be your entire body or just like your hands and feet.
And I was like, no way. Like my skin is not going to peel off. That was not true. My skin started peeling in the hospital. My hands and feet just peeled off, which was so weird. It just would come off in huge sheets. It was not painful. And then randomly, probably six months after I was back in school, I was totally fine, doing sports and everything, and then all of a sudden my hair just started falling out.
And that was just very frustrating to go through because it was already so awful to miss so much school and go through that. In the shower, big clumps of hair were coming out in my brush. And just when I ran my hands through it, it probably took maybe a week. But almost half my hair fell out. My hair, I normally have a lot of pretty thick hair and it was very thin. I had toxic shock in probably 2020 and I think it probably took me until the end of 2021 to even get my hair fully grown back.
Now, I'm still having repercussions from that and I cannot use a tampon ever again which was extremely frustrating for me to hear, but the doctors were very honest and blunt in the fact that I am super prone to getting toxic shock again, and if I do, the odds of me living through it are much slimmer every single time that you get toxic shock afterwards.
And he said to me with the most terrifying stare I've ever gotten from a doctor that I cannot use a tampon again or I very much could die. So, that was very scary and hard to hear because I had struggled with heavy periods my entire life. And the doctors were actually discussing that with me. And that when I was on my period, I always used a super plus tampon and even a pad as well because I was bleeding so much and the doctors explained that those super plus tampons really should not be manufactured. Like that much cotton should not be pushed up into your body at all. And so to have that in for a long period of time is super dangerous.
And that's why they think I did get toxic shock because I had that big of a tampon in. And so that overall was just very frustrating and hard for me to deal with because then thereafter my periods were so heavy. And I can't use tampons and trying to do that with sports just became really complicated and overwhelming for me to deal with.
But yeah, luckily my hair has grown back. I haven't had anything major since then, but I am super prone to just infections in general now. I keep getting infections in my toe. I got a pedicure the other day and about two days later, I had a toenail infection.
[00:10:27] Carole: How do you manage having your period?
[00:10:29] Lizzie: I really can only use pads, but just recently I had to be going to my gyno a lot just because I was so sensitive down there and they mentioned that the name brands of pads and tampons typically have bleach in them and that completely messes up all of your pH and everything down there, which I'm already super sensitive about. So just recently in the past month, I had to switch to all organic cotton pads and they're about the same price as a normal name brand.
I also had to go on to birth control to control my levels of bleeding because I just could not handle them without tampons because I played sports all throughout high school consistently. And it just was not working out very well for me. But that has helped, but I am still just in general trying to recover. I really don't think my body is fully recovered at all because I've just had so many weird infections and sicknesses from the past couple of years.
[00:11:26] Carole: Did they explain to you why an abundance of cotton is not a good idea to have in your body?
[00:11:33] Lizzie: Did they explain to you?
[00:11:34] Amy: No. No, they just said that if you have a blood flow that warrants a super or higher, meaning a super tampon or a super plus, you really need to look into why are you bleeding that much and what can you do to help that before you start buying thicker tampons, because the thicker the tampon, the bigger area it can harbor the bacteria. That's the way I understood it.
[00:12:03] Carole: Don't they have now those cups?
[00:12:05] Lizzie: So, I can use the cups. I will say they are a lot more difficult than a tampon. I've been trying to use them for probably a year now and I'm still not great about it. I do appreciate the fact that those exist now and that companies are becoming more aware of how dangerous tampons can be. But it's definitely a hard transition.
[00:12:29] Carole: Anything else about that whole experience to help other people?
[00:12:33] Lizzie: In general, I just tell everyone to be so careful. I mean, there's so many recommendations of how long you should keep one in. And it's hard because I did it forever. I kept tampons in for longer than you should. I just ended up having it happen to me years later. I was using tampons for years before then. I just always recommend people not to sleep in them. I mean, that's already a recommendation, but it just is impactful to hear it from me, someone who actually had that happen. Because when you just read that out of box, you're just like, oh, that's just a suggestion.
At least all of my friends that I've told and explained to. I explained to my whole cross country team as well. And they, you can see the looks on their faces. I mean, everyone is shocked to really hear that you can get that disease from tampons. So I think just in general, to be a lot more aware of how long you have one in.
[00:13:22] Amy: If you use a super plus, you can go longer, but you might lose track of it. You know, you don't have that feeling of, gosh, I have a yucky feeling, heavy tampon that needs to come out. You don't have that feeling because it's just stays drier longer. Maybe that's the key there. Don't ever use those that give you the ability to stay longer. Use the ones that are thin. So, you're going to have to change it more frequently. That bacteria is not going to have time to grow.
[00:13:50] Carole: And have you ever come across this in your studies at school or anywhere in your young life about even knowing before this happened to you what, that there is such a thing as toxic shock?
[00:14:01] Lizzie: No, not at all. And that's the crazy thing is you don't hear about it at all. Like, I remember, I read it once, and I just remember, it was like in the back of my mind, I remember being like, oh, I read that on the side of the box, but no one talks about it really. I mean, I've been in so many different biology classes, and I have so many friends who took pre-med classes in high school, and it's just not talked about. And it is obviously a rare thing, but it can happen to so many people. And so it is just surprising that it's not discussed more.
[00:14:35] Carole: I remember that whole toxic shock thing happening around the time I think that I got my period, maybe at 16 or 17. And I remember being very careful. I stopped taking the plastic ones and I got the cardboard ones, which are not as easy. And I changed very often, which is a total pain, and I did not wear them at night. And it's not even because I read anything. It was just that I was seeing what was happening to girls on TV. They were really blasting it because it was so prevalent.
As I was listening to you, was there any correlation? Like, it sounds, the way you told the story was, clearly, Lizzie, you were sick, and the way your mom told the story, so you're sick and you're in bed and your mom's praying, they know it's bad, but nobody seemed to be in the room really worrying too much until your mom found the tampon and you could see something there. So what were the doctors trying to figure out in your opinion between the time that you opened up her legs and the time that she was just lying there? Were they actively considering things that they were sharing with you or what was your sense or were they dealing with other patients or?
[00:15:44] Amy: Honestly, they thought she had Covid. That was the only thing on their mind. She has Covid. We need to isolate her. We need to isolate you. They wouldn't let me leave the hospital because whatever she had, I had, in their mind. Really interesting, because after all this happened, and we found out she had toxic shock, I had so many nurses come to me and say, we have got to quit thinking everything is Covid.
We've got to stop this. Clearly, we weren't the first patient. They had missed something. And thank goodness we've come so far. They don't do that anymore. But boy, at the beginning of the pandemic, that's all they could think about. And you know what? My sweet little girl here would have died and it had nothing to do with Covid.
It's very scary to think of. All they wanted to do was isolate her, and keep her away from everyone, not realizing there was something inside of her that was killing her. So, I'm glad that we've come away from that thought process.
[00:16:39] Carole: Is there anything I didn't ask you that you'd like to say?
[00:16:42] Amy: I don't think so. I just hope that I can help other people because I know how I felt in the beginning, I just felt so lost and I just did not know what to do. I wanted to be the best mom I could be, but I also wanted to keep my sanity and I wanted my family to be safe and I just, I didn't know what to do and I hope that whatever little tidbits I've learned can help someone else.
[00:17:07] Carole: And I'm sure it can. Thank you very much for being here. You really shared a lot of your personal thoughts and some very personal things. And I know my audience will appreciate it. I wish we talked about these things more. Having you be brave and courageous and generous, it means a lot. So thank you.
[00:17:27] Amy: I'm glad we met in the driveway.
[00:17:33] Carole: To delve deeper into the details and understand more about toxic shock syndrome, we encourage you to reach out to your healthcare provider. Remember, the insights and stories shared in this podcast, as well as the resources listed in our show notes, are for informational purposes only and should not replace the guidance of a medical professional.
Chatting with Lizzie and Amy really opened my eyes. I have always taken menstrual health for granted. Here in the States, most of us can easily get our hands on all kinds of period products. But imagine this, over 5 million girls and women globally can't. They're missing out on school and work, facing health risks, and feeling isolated, all because they don't have what they need for their periods.
This isn't just about missing a few days here and there, it's about lost opportunities, serious health issues, and deep psychological impacts. I came across this amazing organization, Days for Girls. They're all about empowering communities where menstrual products aren't readily available. They've already helped over 3 million girls worldwide by providing menstrual health resources and education. Want to know more? Check out the Days for Girls link in the show notes.
Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.