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Kathleen rises above her uncommon combination of disorders

By Kathleen, Children’s Minnesota patient 

kathleen-8v2In the summer of 2015, I was dealing with two disorders that had worked their way into my life – anorexia nervosa, an eating disorder characterized by inadequate caloric intake, and postural orthostatic tachycardia syndrome (POTS), a condition that involves a dangerously rapid heartbeat, with symptoms like migraines and dizziness.

Because of the unique combination of the two disorders, I was in constant pain – I had difficulty getting out of bed in the morning, and I could barely eat or drink anything. I had terrible headaches and was always lightheaded. I lost a large amount of muscle mass and my body constantly felt weak. I even endured seven stress fractures, which left me in a wheelchair. My autonomic nervous system was failing, and my heart was suffering. With POTS, blood does not flow freely to the vital organs, which made my heart and stomach have trouble functioning. I was physically and emotionally unable to eat. As I was losing muscle mass, my heart was getting weaker, complicating my blood circulation and disrupting my pulse and blood pressure. Essentially, my body was shutting down.

That July, I was admitted to the Center for the Treatment of Eating Disorders Clinic at Children’s Minnesota. Before I came to Children’s, having not yet been diagnosed with POTS, I tried other treatment methods and programs, but nothing was working for me. I was scared that I would never get the help I knew I needed. I became discouraged and pessimistic, and I had lost nearly all hope.

My first day being treated at Children’s Minnesota, my care team sat down with me and asked, “What is it going to take for you to get better?” I told them it would take a miracle.

“Okay,” they responded. “We’ll be your miracle.”

kathleen-6From that moment on, everything changed for me. For the first time in a long time, I felt hopeful. The environment at Children’s made me feel different, inspired. In the past, I was worried I would be stigmatized by having an eating disorder and treated differently from patients suffering from other illnesses or injuries. But at Children’s, it doesn’t matter if you have diabetes, cancer, an eating disorder or any other illness – everyone is treated with the same compassion and respect. Children’s believed I could be amazing again.

Over the course of the next year, I worked with several different care providers from the Center for the Treatment of Eating Disorders; the Children’s Heart Clinic; the Pain, Palliative and Integrative Medicine Clinic and more. When I was in the hospital, my doctors and nurses became – and still are – my team. “We’ve got your back,” they always said. And they always did.

Still, treatment was extremely challenging. I underwent weekly IV infusions for my POTS, trying to minimize headaches and stomach pain, while continuing the re-feeding process. I have spent countless hours in the Pain, Palliative and Integrative Medicine Clinic, engaging in biofeedback exercises, relaxation and coping strategies.

Since coming to Children’s, the doctors, nurses and staff in every capacity have gone out of their way to make me and my family feel comfortable. From my nurses sitting with me during the night while I couldn’t sleep, to arm-wrestling my doctors, Children’s has become my second home. One of my doctors in the hospital told me, “We’re going to do a lot of things that will make you feel uncomfortable, but I promise, we won’t hurt you.” Together, we were determined to beat these illnesses – whatever it would take.

kathleen-7During treatment, I was so thankful that I had such a great support system by my side at all times – my family. My family, including my sisters, were there for me every step of the way, and I know I wouldn’t be where I am today without their constant love and encouragement.

“After Kathleen’s diagnosis, we were treading on uncommon ground – we didn’t know how we were supposed to feel, what we were supposed to think or what we could do to help,” my mom said. “It’s a difficult thing to go through as a family, but we knew Kathleen was in the best hands, and everyone at the hospital supported us – all of us. They made the whole family feel like all our questions, concerns and comments truly mattered.”

Because of the unique combination of my disorders, I didn’t know anyone else personally who had gone through a similar struggle, so I didn’t have anyone to look to as an example for guidance. But my care team gave me someone to look up to – myself. They encouraged me to be my own hero, to set a positive example for others who would follow in my path. So I did. There were several other patients I met and bonded with in the hospital, and I hope that I am able to serve as a role model for them and other patients after them. It is my hope for other children and their families to see my story and discover the hope we found at Children’s.

Children’s Minnesota truly was my miracle. They saved my life. My journey is not over and some days are still a challenge, but I am continuing to move forward. I have grown so much as a person this last year, and I am confident that with the support of my family, friends and care team, I will be able to handle anything that comes my way. And the best part? I know that Children’s always has my back.kathleen-4

Help support patients like Kathleen.