What do you do when you're told you're only going to live until you're 14 years old and have to survive with failed kidneys until then? This story comes in partnership with Bella Soul supporting students with disabilities in USA
I had my first surgery when I was three years old. It was a small surgery, a minor bladder-repair, nothing to worry about. It was what happened after that surgery that would change my life forever.
Post-operation I was given ancef, a commonly used cephalosporin antibiotic. However, I am highly allergic to this medication and was given it by mistake. Less than a week later I was back in the hospital fighting for my life as my kidneys failed. I finally got to go home after a month, with one of my kidneys completely non-functioning and the other one only functioning at about 50%. My mom was told that we would just be waiting for the other one to fail, at which point I would need dialysis or a transplant. What a dim future to give a three year old, right?
They said at best my body would hold on until around age 14. So that was that. I took my medications every morning and night and even did a round of growth hormone shots, which I gave to myself because I was quite the independent eight-year-old. I did not understand what all of this meant for many years. I knew that I spent a lot of time in the hospital, that I went to more doctor’s appointments than all of my friends, and that it was very important to take all of my medications, but I really did not understand why.
As I got closer and closer to turning 14 my mom did her best to prepare me for what might happen. However, there is no way to prepare for something like this. I got more and more nervous as I turned 14, and then 15, 16, and 17. I started to think that maybe I would be that miracle person that lived on half a kidney for their whole life. Unfortunately, that was not the case. I was so blessed by the 14 good years that I did have, but at 17, and a junior in high school, the other kidney gave out. I had been so involved in school and the community, and I worked a part time job, and all of a sudden one Sunday evening I went to the ER for a potential sprained wrist and ended up spending two weeks in the hospital and missing a month of school.
However, my journey was far from over. A few months into my freshman year at Colorado State University, I got sick again. I spent the majority of my winter break in the hospital as my doctors tried to figure out why after only a year my transplanted kidney was not functioning properly. After trying every possible treatment, it was determined that the kidney had a virus and would need to come out.
Imagine my devastation as I learned that I would need to go back on dialysis, after only one semester of college. However, I knew that I did it once and I could do again.
This time I chose to do the in-center hemodialysis because I could adjust my class schedule around treatments. I currently go to the clinic three times a week for four hours each treatment. I am on the transplant list and am waiting for another kidney. Of course it is hard, but having been through all of this once already, I know I am strong enough to do it again and I am just trying to focus on all of the blessings in my life.
My biggest advice to others dealing with similar medical problems is to never give up. I mean it. NEVER GIVE UP. It is so easy to feel sorry for yourself and let your illness be an excuse to not be happy or to not do anything productive, but don’t let it. I am the happiest and most successful I have ever been in my life and I sit for 12 hours a week getting my blood cleaned out so I can stay alive.
You are so much stronger than you think you are.
I keep strong by keeping busy and staying involved. I participate in three on-campus clubs, I am a youth group leader at a local high school, and I am very involved in a local church. I also volunteer with an organization for foster and adoptive kids. One of the things that has been the greatest for my mental health has also been finding a supportive community, of which I am blessed to have two. My friends that I lead youth group with have been a huge support, and so has our on-campus club for students with chronic illness. I am so grateful to have found a group of people that can understand a little bit of what I am going through and that has absolutely been one of the biggest blessings. I encourage anyone with a chronic illness to look into support groups and on-campus resources. If your school does not have any, try to start something! Even though pretty much everyone in our group has a different disease/disorder we are all able to support each other and I am so grateful for each and every one of them.
Overall, I believe that a strong support system and a positive, resilient attitude are the two greatest keys to success through illness. YOU are your biggest advocate and only YOU can make the choice to be strong and determined and persevere through whatever obstacles come your way. I know my journey with chronic illness is far from over, and I am just waiting for the next step and appreciating every good day I do have.