Your Personal Journey

SK: Let’s start with your personal journey with sepsis. How did your brush with sepsis bring you to advocacy?

JD: I started my career teaching English in Montgomery County Public Schools for nine years before transitioning into freelance journalism in 2001. I wrote for The Washington Post, Woman’s Day, Costco Connection, and various medical trade journals for over a decade afterwards. My career was thriving, but in 2012, things changed. I had complications from Crohn’s Disease, Postural orthostatic tachycardia syndrome (POTS), and Hypermobile Ehlers-Danlos Syndrome which forced me to stop working and rely on mobility aids.

In May 2021, my health took a turn for the worse when I suffered septic shock caused by a hole in my colon, known as a colon perforation. After over a month in the hospital and emergency surgery that removed half of my colon, I had to learn to walk and care for myself again. The recovery was long and gruelling.

During my recovery, I found opportunities to collaborate with Sepsis Alliance. It was a pivotal experience as I got to connect with other survivors at the Alliance. Connecting with Sepsis Alliance gave me my sanity back and stopped the tears that flowed every day. I was particularly inspired by one gentleman from the Alliance who was giving talks in his community. Although I still had a long way to go in terms of recovery —and physical therapy was intense—I began to think, “I want to do that too.” 

As a former teacher, I love educating people. So, last summer, I decided to take action. I created a PowerPoint with photos from my ICU stay, showing people what I went through. Seeing the images — me on a ventilator, the helicopter taking off — helps others grasp the gravity of what sepsis does. That’s when things started to take off. I began giving talks about sepsis, using those visuals to tell my story.

SK: What stories and ends do you push for as a sepsis advocate?

JD: After I got my start with sepsis advocacy, I started corresponding with Thomas Heymann, President of Sepsis Alliance, about my sepsis talk and I was invited by the Alliance to speak in Washington, DC. Since then, I’ve been to DC many times, working with organizations like Voices of Sepsis, who I vlog for and share my journey through. By going to Congress itself,  we were able to make the members of Congress take notice and push forward important legislation like the PASTEUR Act. Just like my editors, we realized that we have to keep reminding them until they finally say, “Okay, let’s look at this because I’m tired of hearing from this person.”

Beyond advocacy, I’ve also joined efforts to reduce blood culture contamination. Being able to detect the bacteria that infect us makes sepsis diagnostics easier and encourages responsible antibiotic use. Both of these are crucial to push the fight against AMR.

SK: Continuing on that angle, what about you or the topics you’re covering made you an effective sepsis advocate?

JD: I think I was invited to share my story across diverse platforms because I’ve been so vocal about living with chronic illness. I’ve especially been active on Instagram where I blog about everything, from how sepsis has impacted my health to personal experiences like going in for bone grafts. Sepsis Alliance saw the passion in survivors like me and those who have lost loved ones because of sepsis. They recognize that we’re all trying to spread the same message about sepsis, and they know we’re stronger when we join forces and unite. Individually, we’re just one voice, but together under Sepsis Alliance, we’re a force. That plays a huge role in me being an effective advocate.

Now, I’m back to doing what I love and writing for major outlets about sepsis and other health and travel stories. I’m also writing accessibility guides for travellers with disabilities for tourism websites. I give talks on sepsis and use my social media to share my health journey and to raise awareness through that. You may ask, why the constant effort to advocate? That’s because sepsis is not a one-and-done issue; survivors like me often deal with lasting effects of sepsis, and I’m committed to making sure our stories are heard. We want to see sepsis stories featured in the mainstream just as much as cancer, for instance!

SK: How did your experience with sepsis shape your views on self-advocacy in healthcare?

JD: As a sepsis patient, I’ve learned that it is essential to speak up. I remember a week when doctors were pushing prednisone, and my husband was with me, saying, “She looks so different; don’t you see?” These were my regular doctors, but because of telehealth at that time, or being in a rush, they could have missed things in my symptoms that led to the catastrophic consequences.

It can be hard for many people to advocate for themselves, especially those who are more reserved. But asking questions is crucial. You might feel like you’re bothering the doctor, but you could be saving your life. Always ask, “Could this be sepsis?” and request clarity on how they can rule it out. Understanding the tests they plan to conduct can provide reassurance.

Patient Advocacy

SK: What aspects of sepsis do you notice the general public most commonly fails to understand? How do you stay encouraged even when the public may not comprehend the importance of understanding sepsis? 

JD: People still don’t grasp that sepsis is lethal. Over 350,000 adults and 6,800 children die from it each year. When I tell my story to others, I often see shocked faces. Because people aren’t aware of sepsis, some delay seeking help hoping that things will improve on their own. But with sepsis, you don’t have time — getting to the hospital is crucial. That’s why education is key.

As advocates, we sometimes wonder if we’re making a difference. I started to feel that way this spring, especially as I was juggling a lot and feeling tired. But then, I received a call that reminded me why this work matters. While I was shopping, a woman called to say her dad was discharged from the hospital with kidney stones but was getting sicker. She remembered the signs of sepsis I talked about at the sepsis talk she attended just the week before, and asked for advice. I told her to get him back to the hospital, and it turned out he had developed sepsis, which was treated early.

Another woman called me while she was in the hospital for a UTI. She recognized her symptoms and insisted on going to the hospital, avoiding severe complications. She recovered after a week of antibiotics. And although she felt fatigued, she was grateful she got treated early. 

All in all, I want people to take sepsis as seriously as they do cancer, heart attacks, and strokes. Because it’s just as serious.

SK: Now that we’ve established the importance of sepsis advocacy, let’s shift to talking about treating sepsis itself. What do you think are the biggest challenges and barriers to diagnosing and treating sepsis early? 

JD: Right now, I’m focusing on ensuring access to care for sepsis patients. How quickly a sepsis patient receives care depends on where they live. In other words, it’s a geographic issue. Someone who only has access to an urgent care clinic that’s open from 9 to 5 has fewer opportunities to seek treatment. In contrast, I live near Johns Hopkins and other major hospitals, which is why I was able to be flown to Shock Trauma for life-saving surgery that morning. That saved my life. If I had lived in a rural area, I likely wouldn’t have survived. Those areas often lack the funding, resources, provider education, and community awareness needed to handle serious conditions like sepsis.

I also want to make sure that the two-way street of ensuring sepsis care runs smoothly. On the one hand, patients need to know when to seek help. For instance, someone who is on immunosuppressants, like Prednisone, to treat their chronic illness, with a worsening skin infection might need to see their doctor sooner than someone who doesn’t take immunosuppressants, with milder symptoms and no signs of infection Many people, including myself, try to avoid going to the ER – even consider sleeping through the pain when I really had sepsis. But it’s crucial to recognize when an infection is getting out of hand, like when pain spreads from a wound or if you’re feeling symptoms like I did with my colon perforation. I couldn’t move my left leg. You, the patient, have to know when it’s time to act.

On the other hand, providers need to know when to provide care. Unfortunately, many young women in particular are dismissed by doctors, who assume they’re too healthy to need urgent care. As the infection gets worse, the sepsis has emerged and grown severe by the time many of these women seek help. For example, I was extremely swollen and bloated for two weeks before my colon perforated, and because I was on prednisone, the doctors assumed the swelling was a side effect of the medication. But it wasn’t-it was my infection getting worse. Had I been diagnosed earlier with diverticulitis, and treated earlier with IV antibiotics, I might have avoided ICU, a ventilator, and emergency surgery.

Both providers and patients need to be more aware of early warning signs of sepsis to prevent delays in diagnosis. The key for both groups is to recognize when things are getting serious and act before it’s too late.

SK: Sepsis is a life-changing, traumatic experience. What kind of support do you think sepsis survivors need in managing any post-traumatic effects?

JD: First and foremost, go to Sepsis Alliance, find the Connect program, and sign up. Even if you just log in to listen and don’t participate, hearing from other survivors can be incredibly valuable. Listening is a great first step.

Second, be very honest with your doctor about how you’re feeling. I now require my doctor to explain procedures to me in detail beforehand. This helps ease your fears and prevents you from panicking. Also, communicate openly with your family and friends. They can’t read your mind and don’t know what you’re feeling. For example, I have a good friend, Lily, who FaceTimed me every day for nearly two years during the COVID pandemic and provided me with a sense of connection without risking exposure as I recovered from my sepsis crisis. It’s important to have someone safe to express your feelings.

Lastly, don’t forget about mental health counselling. I saw a therapist weekly for over two years, and my husband came along. During that time, I often felt angry watching friends enjoy life while I was stuck in recovery. It felt selfish, but I was in a difficult place, unable to do simple things like walk or shower without help. When you can healthily express your feelings to those close to you, your loved ones will gain a much better understanding of your experience to help you when you are really in need. 

Antimicrobial Resistance

SK: The PASTEUR Act has significant implications for sepsis and AMR. What does the legislation mean to you, and how do you think it will benefit survivors and those living with sepsis?

JD: AMR is a silent pandemic we’re not talking enough about; imagine a cancer patient who survives their treatment, only to pass from an infection because no antibiotics are available to treat it. It’s heart-breaking. We can’t let that happen.

Ultimately, we need new antibiotics. With the world’s population growing, the risk of antimicrobial resistance is skyrocketing. We’ve all heard the statistics too. Millions of people are set to die from antibiotic-resistant bacteria by 2025. 

Seven months after my discharge for septic shock and my first surgery, I required a second surgery to reverse the colostomy that was placed in May when they removed part of my colon. All this in total cost Medicare and Medicaid a quarter of a million dollars- and that’s just for one person. Multiply that by the hundreds of thousands, even millions, of people affected by sepsis every year. If we could get a handle on AMR and reduce resistance, Medicare could save billions in the long run. We need legislators to understand not just the human impact, but also the financial savings. It’s both a life-saving and cost-saving measure.

That’s why the PASTEUR Act provides funding for the development of new antimicrobials; pharmaceutical companies often can’t afford to develop them alone. The goal is to encourage innovation in this area, which is essential to combat AMR. 

To continue advocating for AMR solutions, I discussed Lulu’s Law during Hill Day. This law is crucial because of the national sepsis registry it proposes. Many sepsis survivors, including myself, are at higher risk of developing sepsis again; if hospitals had access to a national registry, they would know a patient’s history with sepsis even if they are unconscious. 

SK: You briefly touched upon laws to help fight sepsis. What changes do you think are most needed to raise awareness of sepsis? 

JD: What we need now is more collaborative learning between the community and clinicians. It would be especially helpful to involve the youth more actively. Young people today are incredibly impressive; they have heart and passion, and that can drive real change. By getting them engaged-especially through social media platforms like TikTok-we can empower them to spread awareness and knowledge about sepsis and health issues. It’s essential to harness that enthusiasm and energy to make a difference.

We can also learn from the accessibility of CPR courses, which you can easily find training for at your local YMCA or the Fire Department. We should create a similar program for recognizing the signs of sepsis that’s delivered in a simple, digestible way. Imagine seeing a notice in the YMCA newsletter about getting certified in sepsis awareness, just like CPR. Having certification could be very beneficial for EMS personnel as well. 

I also believe community talks can be powerful. When survivors or those who have lost loved ones share their experiences in a group, it sparks interaction and can make the discussion about sepsis organic. In that same vein, we need more patient education and training in hospitals and wellness centres. 

SK: Thank you so much for sharing your incredible journey and advice. What are your next steps?

JD: Within the next year, I plan to launch a weekly sepsis and disability awareness podcast. It would be structured similarly to the Frasier TV show from the 90s, where I would have listeners call in or message in to ask questions in real-time to expert guest speakers, such as doctors, researchers, and pharma leaders. The focus would be on sepsis, disability support, Social Security processes, AMR, and other information that lay people like us could have difficulty accessing. I’m currently acquiring the equipment for the podcast and am excited to interact with the community and continue to educate them through the podcast.

I am also working on my first book, which I tentatively titled I Just Keep Dancing. There, I will focus on my personal experiences, including navigating some of the biggest challenges in my life, the loss of my oldest daughter almost 20 years ago, brief homelessness, and my failing health, with the sepsis crisis as the central theme. The book will be a mix of memoir and educational content with a message that the poor, chronically ill, and disabled, are not the scapegoat in the U.S. We actually contribute a lot and given the right public resources and help, we can and do succeed. I want my book to show how important our social support systems are, and particularly what the experience of recovering from medical trauma and sepsis is like. I am working on it consistently these days whenever I get the inspiration.