A Young Mother With C difficile Deals With Social Isolation, Concerns of Recurrence

Sara Embry

Sara Embry was newly pregnant and contracted C difficile in a most unusual way. She picked up fecal spores at a local restaurant. She had not taken any antibiotics.

As many people who get the infection, she initially struggled to find answers to her condition. She also lacked information from medical providers. She eventually found support through the C difficile organization, the Peggy Lillis Foundation (PLF), and became a peer volunteer helping others who are suffering from the condition and seeking answers and comfort.

Embry sat down with Contagion to discuss her experience and her involvement with PLF.

Contagion: Can you share what it was like to be diagnosed with C diff while pregnant, and how you managed both the infection and your pregnancy at the same time?

Embry: It was absolutely terrifying, because all the doctors and nurses that I came into contact with didn't really have much experience with it. They misdiagnosed me. At first, I was extremely sick for a few weeks.

I thought that I was going to lose my baby.

For one, there was no information that I could find related to pregnancy and C diff online. I kept asking doctors about it, and no one could give me any information. They just told me that vancomycin was safe for my baby, and that was the extent of it. However, when I was experiencing C diff, I was losing weight rapidly. I couldn't get out of bed, I couldn't keep any food down. And for anyone that has been pregnant, they know that nutrients are very important. Morning sickness is already hard, but then adding C diff on top of it—where you're rapidly losing the nutrients that you desperately need for your growing baby—the level of weakness that I experienced was something that I've never had before. My husband and I are modern day homesteaders, so I'm used to being up and working, doing all the things that I need to do, and I just wasn't able to.

Contagion: What were some of the most challenging aspects of your recovery from C diff, both physically and emotionally?

Embry: Well, physically, I am already a rather small person, and keeping weight on has always been hard for me, but especially in the first part of pregnancy. This was my third pregnancy. At the time, I already struggled with morning sickness and losing weight and trying to maintain that, but I lost 17 pounds in a matter of just a few weeks. I was extremely weak. I could not get out of bed. My arms didn't even look like they belonged to me. They look like child's arms, and I was losing my muscles.

Walking across the house was expending all the energy that I had. That's something that I was absolutely not used to. And I had 2 other young children that I needed to care for, and I wasn't able to. It was hard on everybody in the family. My husband had to take off work, and not being able to care for myself was something I was not used to experiencing.

Emotionally, there's an isolation that comes along with C diff that no one really talks about, because you can't invite people over. At first, they'll start offering to bring you meals or help with the kids, but they couldn't be over to the house. It was so contagious, and I was terrified of passing it along to anyone. I couldn't let my children sit around me. They couldn't come and talk to me and play with me. It was horrible. It was hard on them. I had an active infection for over a month, and I was completely alone. I couldn't let anyone come around me. And that's something that really messes with your head whenever you are that isolated.

And when I finally got over the active infection the fear of reoccurrence is something that it's almost like PTSD, because everything that I eat, I was worried, am I going to be feeding the infection? Am I giving it? What am I doing to make it worse? What am I doing to make it better? It was every thought that I had. What can I do today that will help me tomorrow and not make it worse, but the fear of reoccurrence. I mean, I still struggle with that. One of the things that I do, I'm very, very strict about what I eat, even still, over a year later, I don't compromise on my diet. I stick to what I know is safe, and that's something that I'm not sure if I'm ever going to be able to look past, because the impact that C diff has on your body is something that you can't even describe to someone unless they've seen it themselves. Even thinking about it just makes my stomach churn, because there's just nothing like it.

It's like PTSD, and it stays with you, even after the experience.

Contagion: In talking about this traumatic experience that you had with C diff, how did it inspire you to get involved with the Peggy Liillis Foundation?

Embry: Yes, well, as I said earlier, finding information on C diff was extremely hard. And eventually I did come across the Peggy Lillis Foundation, and they had a handbook for how to deal with the active infection, and it had recipes for foods that were safe. And what to do, like warning signs, all the things that you need to know, and that was the most in depth.

Whenever I reached out to them, I couldn't believe that they actually wanted to talk to me. They had people who were checking in on me, and not only did they provide me with the information that I needed to get through the infection, but just that level of isolation that I talked about. The Peggy Lillis Foundation really helped me with that, because they understood—Christian [PLF cofounder] losing his mom—like he really understands and speaking to them, it just made me feel like I wasn't alone, which I had felt alone throughout the whole process up until that point, and so with them. I believe that they're doing good work, and I'm just so incredibly thankful that I want to be able to do that for other people.

Contagion: In terms of looking at a potential message, what do you hope to convey to the public, as well as policy makers through your advocacy work with the foundation?

Embry: Yes, well, I stand behind the Peggy Lillis Foundation's vision of where we believe in a world where C diff is rare, treatable, and survivable. We believe in spreading awareness and knowing what people are going through, that they're not alone, and that you can get through it on the other side. And with me being pregnant, for all those women out there who may have it and can't find any information like I did, my baby is happy and healthy and strong, and they can get through it, too.

Contagion: What are the biggest misconceptions about C diff, and how can we build better awareness to improve prevention and treatment?

Embry: Sure, I think that the biggest misconception is that it won't happen to me. We are people that eat the food that we grow; I'm very health conscious, and it happened to me. It can happen to anybody. The mindset that it won't happen to me. It's for elderly people, or people with compromised immune systems, or people who take antibiotics. I didn't take any antibiotics. I picked it up by going to a birthday dinner with someone at a restaurant. It can happen to anyone, and it can pull the rug out from underneath of you faster than you believe.

I think that another misconception is that it's rare. It's estimated to cause half a million infections each year. It's something that everyone that I've encountered, they have never heard of it before, and it's happening to so many people.

It's not as rare as we think. I think that everyone just needs to be aware that it is a possibility that could happen to you if you're taking antibiotics, and doctors should warn you. You know this could be a side effect of taking an antibiotic, and do you really need the antibiotic? If the answer is yes, then absolutely take it, but if the answer is no, let's explore some other options, because it's way worse than just trying to describe it to people, but it's definitely something that would outweigh me considering taking the antibiotic again. You take antibiotics once, and you can get C diff. And also that the spores are everywhere; it's not just spread by taking antibiotics.

it could be on the grocery cart at the store. You don't know, and you need to wash your hands properly. And even then, don't touch your face, and all the things that they've been drilling into our head the last few years of COVID.

I think that awareness is key. I had never heard of it before. Maybe if I had, I wouldn't have felt so helpless in the beginning. The doctors and nurses that I encountered were ignorant as well. They just diagnosed me and sent me on my way. They didn't send me any information about it. I had to learn from myself how sick I was, and that was pretty terrifying on its own. Awareness is a big one, because for something that no one's ever heard of, it's affecting a lot of people.

Contagion: Can you talk about what you're doing with PLF?

Embry: I attended the summit, and we went to Capitol Hill. We advocated for being able to make your own decisions. As far as prescriptions, having some freedom with your doctor and insurance companies, not dictating what we are allowed to have. There's options when it comes to C diff, and being able to to advocate for yourself what you need is very important,

And since the summit, I have been working as a peer support volunteer. Anyone who's going through an active infection can contact me. PLF will assign them to me, and I can call them, email them, whatever they are in the need of what they what they feel like. Some people don't actually feel like talking on the phone whenever they're in the middle of an infection, but they can email me and I'll email them back, or they can text me and I just offer that I'm a friend that has been through it. We talked about the isolation of it when you don't know anyone who's going through what you've gone through. I can't give medical advice. Obviously, I'm not a doctor, but if you have questions about what to know, or just how I got through some stuff, I'll share my story with them and walk them through it. Just being able to speak to someone who knows really makes a difference. And that's what I want to try to do for other people.