The Diagnosis that changed EVERYTHING –
This is the (cliffs notes) story of that pivotal moment in my life that changed everything for me… it was the beginning of a new chapter in my life that I was convinced would never be anything but me feeling lost and hopeless. Turns out, it was the best thing that could have ever happened for myself, my children and my future.
Episode Summary:
In this episode, host Kim Kosteck shares the profound journey of navigating her daughter Korina’s diagnosis of eosinophilic esophagitis (EOE). From the initial shock of the diagnosis to the challenges of extreme food restrictions, Kim opens up about her struggles in an abusive marriage and the transformative decision to opt for a gastronomy tube. The episode explores the complexities of managing EOE, the creative adaptations to food restrictions, and the unexpected opportunities that arose from adversity. Kim reflects on the impact on her family, the power of connection with others facing similar challenges, and the gratitude for the positive outcomes that emerged along the way.
Key Takeaways:
- Facing Adversity: The episode delves into the emotional journey of facing a challenging medical diagnosis and the initial struggles to comprehend its impact.
- Unfiltered Reflection: Kim shares a vulnerable moment of wishing for a different diagnosis, offering a raw and unfiltered perspective on the complexities of the situation.
- Navigating Extreme Restrictions: Listeners gain insights into the daily challenges of managing extreme food restrictions, creative alternatives, and the evolving landscape of available options.
- Transformation through Struggles: The episode highlights the transformative decision to end an abusive marriage and the positive impact it had on Korina’s health.
- Gastronomy Tube Journey: Kim discusses the controversial decision to opt for a gastronomy tube, detailing the positive transformation in Korina’s life post-tube placement.
- Finding Strength: The narrative emphasizes finding strength and opportunities in unexpected places, encouraging listeners facing challenges to persevere.
- Connecting with Others: Kim explores the ripple effect of sharing Korina’s journey, connecting with other families facing similar diagnoses, and the power of a supportive community.
- Gratitude and Reflection: The episode concludes with gratitude for the transformative journey, reflection on unexpected opportunities, and an invitation for listeners to connect with the host.
Transcript:
Have you ever had a seemingly normal day and then all of a sudden you get news that just feels like a punch in the gut? Well, that is what we are going to be talking about today in this episode of Life. Life isn’t always easy.
I’d like to offer an improved version of the podcast transcript:
The narrative unfolds not eight years ago in 2014, as one might think, but well before then. However, February 13, 2014, stands out as a crucial turning point in my life. It marks the day when my daughter’s doctor, with an intricately thick Turkish accent that challenged even face-to-face comprehension, called to deliver a diagnosis that would reshape my reality. The words “Are you sitting down?” preceded the revelation of the biopsy results from her endoscopy, unveiling a chronic disorder known as eosinophilic esophagitis.
Back then, those medical terms were as foreign to me as a language I’d never heard. I asked the doctor to slow down, carefully spelling out the condition so I could write it down. As he explained the implications, memories flooded in of a young friend of my oldest daughter, living in Philadelphia years ago, who faced a similar ordeal. The regimen of elimination diets, food trials, and endoscopies seemed daunting, recalling the strain it put on both the child and his family.
My immediate call was to that friend, now residing in Maryland, seeking insight into what lay ahead. Hearing the same words from her as the doctor had spoken to me, I couldn’t contain my emotions. Eosinophilic esophagitis meant my daughter would have to relinquish all her favorite foods, a heartbreaking prospect for any parent. In that moment, I found myself grappling with the realization that, as difficult as it sounds, I wished he had told me my child had cancer.
Not that I desired cancer for my kid, but the prospect of either overcoming it or succumbing to it seemed more straightforward than a life-altering condition affecting every meal, every day. Food, omnipresent in our lives—parties, commercials, three meals a day plus snacks—was now laden with restrictions: wheat, soy, egg, and the existing dairy-free regimen. It felt like a monumental challenge for both her and us.
What is eosinophilic esophagitis, or EOE? It’s an immune response to food passing through the esophagus, triggering white blood cells called eosinophils. Yet, by the time they reach the esophagus, the food has already moved on, leading these cells to attack the esophagus itself. Each meal, even supposedly safe ones, became a painful experience for my daughter.
Fast forward, we believed we had the disease under control, only to discover the need for drastic measures—eliminating foods, using swallow steroids, and undergoing additional endoscopies. Attempts to reintroduce certain foods backfired, leading to a bewildering cycle of elimination, patch testing, and allergy identification.
Throughout this challenging journey, I was ensnared in a miserable, abusive marriage. The lack of support for my daughter’s condition further strained our relationship. Finally summoning the strength, I ended the marriage, a decision long overdue. At the peak of my daughter’s food restrictions, she avoided wheat, soy, dairy, egg, tree nuts, peanuts, poultry, red and blue dye, natural and artificial flavorings, corn, rice, and potato. The list might sound overwhelming, but we navigated it, discovering creative alternatives for even the most basic items.
People often express disbelief at how we managed, but the truth is, I never allowed myself another choice. There was no alternative; I was determined to ensure my daughter lived as full a life as possible, despite the challenging road ahead. Although she grew progressively sicker, I clung to the belief that we could find solutions and navigate through the hardships as a team.
Amid Karina’s worsening condition, I made controversial decisions, including opting for a gastronomy tube, akin to a port directly into the stomach. This allowed her to receive essential nutrition through a formula designed for children with food allergies. Despite its repulsive taste and smell, it became a lifeline for Karina, enabling her to grow and thrive.
Placing the tube marked a turning point. Karina, once confined to a wheelchair and unable to attend a full day of school, transformed into a varsity cheerleader as a high school sophomore. Her journey, followed by thousands, connected us with families facing similar diagnoses. Despite the unimaginable challenges, we emerged living our best lives.
Reflecting on that pivotal phone call from the doctor, I find myself grateful. While I would never wish this on any family, the experience shaped us, bringing us closer, prompting the long-overdue divorce, and opening unexpected opportunities. In the midst of challenges, a different perspective can reveal hidden opportunities. No matter what you’re going through, remember, you’re not alone. Embrace challenges, confront them head-on, and you’ll emerge stronger and, perhaps, even grateful.
Thank you for joining me on “Life Isn’t Always Easy.” I’m your host, Kim Kosteck. Connect with me on social media, explore my free challenges at lifeisntalwayseasy.com, and don’t forget to leave a rating, review, and subscribe to stay updated on new episodes.