Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for atypical hemolytic uremic syndrome (aHUS) patients, click here.

Written by Carly

In 2018, I was a new college graduate with a passion for serving others and a desire to see the world.  I combined these desires and joined the Peace Corps as a teacher. After completing all of the necessary medical evaluations and paperwork, I was cleared to begin my twenty seven months of service, moving to Namibia, Africa, in August 2018. Six months later,  during the last week of January 2019, I developed what I thought was a stomach bug. Little did I know that I would spend the following 41 days hospitalized, fighting for my life.

It quickly became evident that I was much sicker than I had thought. My kidneys shut down, my hemoglobin started dropping, and I was moved from the clinic just outside of my village to the ICU in the capital. As dialysis, blood transfusions, and plasma exchange became necessary, I was flown to South Africa, a country where I had never been and knew no one, to get the medical care I needed. It was there that I started the hardest part of my fight as I went into respiratory failure.

I was alone in a foreign country fighting for my life and looking for answers. I wound up with chest tubes and on BiPAP to try and help my lungs and respiration. My mom found a flight to South Africa and was able to join me in the hospital there. While my doctors in South Africa were very intelligent and did the best they could for me, we knew I would have to return to the United States to find the answers and the care I needed.

After two and a half weeks I was flown back to the U.S. via air ambulance where I was diagnosed with the rare disease atypical hemolytic uremic syndrome (aHUS). I started Soliris infusions right away and worked to begin healing everything that aHUS affected, from my lungs, to my eyes, to my kidneys. My muscles had been breaking down from my time spent in a hospital bed, causing me to lose about twenty pounds. I also had to regain strength in order to walk. Forty-one days after I was admitted to the hospital in Africa, I was finally discharged and able to go home. It took three months of dialysis before my kidney function partially returned and I carried on with Soliris infusions until January 2020.

My world as I knew it had completely been flipped upside down and my life revolved around medical appointments and learning to live with my rare disease. I was also left wondering “What’s next?”

When I thought back to my time in the hospital, I was most inspired by my nurses who provided me with compassionate care and saw me through my worst days. I realized I was in a unique position having survived the things I did and decided nursing school would be a great fit for me. I recently finished nursing school in August, and I have a job lined up in a step-down ICU unit in one of the nation’s top hospitals. I hope to transition to the ICU after a couple of years when I’ve gained more knowledge and experience.

Throughout my journey there were a few moments I wanted to give up because I was just so unimaginably exhausted. It makes me sad that I ever felt that way, but I never could have imagined that life would be this good again. Despite all of the struggles some really great things have come out of this experience such as a new found passion for nursing. My story just goes to show you that if you’re ever struggling, stick out your fight because I promise things will get better. Good things often just take time.

This is a disease I will always live with, and there are so many things I still don’t know. Whether I relapse and need a kidney transplant in 10 days or I don’t need it for another 10 years, I’m not worried. If the past two and a half years have shown me anything, it’s that I have the best support system. I’m glad that I can walk away from all of this a little braver, more resilient, and a whole lot stronger. No matter what I accomplish in life I think my recovery story is what I will always be the most proud of. I’m so glad I never gave up on myself!