My Life-Saving Journey at Texas Children’s Hospital

Patient with end-stage renal disease shares her story of hope and resilience after a renal vasculitis diagnosis. 

When I was seventeen years old, my life abruptly changed. One night, without warning, I was rushed to the Emergency Center at Texas Children’s Hospital West Campus. I was violently sick and could not stop vomiting.

At first, I was diagnosed with severe dehydration. Further tests revealed that my kidneys were inflamed and had suffered some sort of injury. The hospital ran a biopsy. My condition escalated. They rushed me to Texas Children’s in the Medical Center. It was shocking how quickly it all happened. 

In the span of days, I went from being a perfectly healthy, seventeen-year-old girl to a patient in end-stage renal failure. 

The Diagnosis

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My official diagnosis was renal vasculitis. Vasculitis is the inflammation of the veins — in my case, the small ones found in the kidneys. Vasculitis is an autoimmune disease, so it was my body attacking itself. Much like other autoimmune diseases, there is no cure and no explanation for why it happens. 

After my transfer, I had a temporary neck catheter inserted so that I could undergo dialysis and pheresis that same night. I was placed on dietary restrictions, and a whole bunch of meds, and I was told to avoid physical activities. Most notably, I had to be careful of water since getting my catheter wet could lead to a dangerous infection — it's a central line that goes directly to my heart. 

Vasculitis is extremely uncommon. It may be similar to Lupus, but it's really a unique disease. Compared to Lupus, in fact, not much is known about it. It is not genetic; it isn’t caused by drinking too much soda or anything like that. There’s nothing I could have done to prevent my disease. 

It just happened — and it happened aggressively. My health deteriorated faster than anyone could have anticipated. 

A New Life

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When I was discharged from the hospital, I remember feeling scared, frustrated and physically very weak. I was exhausted from being bed-bound for most of my initial stay, and I needed help with almost everything. It was hard to wake up and remember, each day, how different my life is now. 

As part of my treatment, I have to receive hemodialysis. Hemodialysis filters my blood since I'm in end-stage renal failure and my kidneys aren't functioning well enough to manage that without help. 

Another challenge has been chemotherapy. Cyclophosphamide was administered to help wipe out my immune system, and I lost a lot of my hair while undergoing this treatment. I remember crying, while standing in front of my bathroom mirror, because I could barely recognize myself. No matter how gentle I was with my hair, it kept falling out in clumps. Finally, I decided to buzz it off. 

The funny thing is, a part of me always wanted to buzz my hair — I remember thinking it would be fun to tell my grandkids someday that their grandma was so cool she rocked a buzz cut. This made me realize that I had the power to tell my own story, to interpret my disease for myself. I am more than my symptoms; I am more than what my disease makes me feel like. Pain is temporary, and not every day is a bad day. Every single day I can choose to wake up and do whatever I can to make it better.   

Hope for the Future

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After months of physical therapy, I am happy to report that I’m finally able to get back into roller skating and other hobbies that I missed so much. I now have enough stamina to get through most days.  

I switched to homebound services — provided by my school district — to help manage school in my condition. To make up for the lack of social interactions, I go out with my close friends regularly or with my brothers; they're all I really need. A lot of my life at the moment consists of appointments and hemodialysis, so I just make sure to schedule my personal life around that.

My main sources of motivation are my family and my friends. My mom is more than happy to be my primary caregiver and to cater to practically every whim, but I know that chronic illnesses are hard on everyone involved. My brothers, Axel and Alex, keep me sane with their banter — and by never treating me differently. Brisa, my best friend, knows how I feel even before I know how to express it, and my boyfriend, Isaac, is always there for me. There are still days when I feel like a burden, but their unwavering support reminds me that I am, and always will be, more than my disease.

A Life-Changing Difference

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I am so grateful for Texas Children’s Hospital. When all of this started, I was so scared, but the doctors, nurses, fellows and general staff at Texas Children’s went out of their way to make me feel better. 

I will never forget the dialysis nurses who held my hand during my first treatments, and the ICU nurses who saved my life and took care of me at my worst. There is no other hospital I would choose. The staff is so kind. I am going to carry the memories of how they treated me for the rest of my life.

Learn more about the Renal Service at Texas Children’s Hospital. To schedule an appointment, please contact the program at 832-824-3800.