Zach Lyman recently shared his kidney story with us. If you'd like to share your own story, click here.
I was not diagnosed with a kidney disease. Instead, I was diagnosed with a congenital urological condition called Posterior Urethral Valve (PUV). As a result of this obstruction, urine and other waste could not exit the body through the bladder and therefore backed up into the kidneys, causing damage. After I was born 6 weeks prematurely, the damage to both native kidneys was beyond repair and so both were removed within a month or so of being born. Since birth, I have now had 3 kidney transplants, all from living related donors. The first was from my paternal uncle, which lasted 5 weeks, the second was from my mom, which lasted 25 years, and the third was from my maternal aunt. I am currently about 2 months post-transplant with that one.
The transplant process and living as a transplant recipient has played a major role in my life. From birth all the way through adulthood, I have had to manage a kidney transplant.
I don't know what a life outside of a kidney transplant would even look like since it is all I have ever known.
While many may have had a life pre-transplant, I have never had to make that transition. Being a recipient has for sure made me more organized and responsible at a young age. My parents raised me to take responsibility early on for my healthcare. This included managing my transplant medications, setting up doctor's visits, asking healthcare/transplant teams questions if I was concerned about something, and being my own advocate. This whole experience I feel has given me a much different perspective on life than perhaps the average child or adolescents. For too long, having a transplant was my sole identity. This is what stood out to them because it was "different" and out of the realm or normalcy in their eyes. I therefore worked really hard in school to create a separate identity from my health conditions. I wanted to be known as the "smart kid" as well. I guess you could say my social-emotional learning experience was vastly different than the average student. Despite some negative experiences, I also believe having a kidney transplant has made me a much better and more intelligent person. I know way more about the ins and outs of the healthcare system than the average 28-year-old. I understand how to advocate for myself and at times push back on doctor's recommendations when I feel their decisions would not be in my best interest or when I simply do not understand. I cannot imagine my life without a transplant, and I feel that is actually to my benefit to my personal growth and development rather than a hinderance.
Kidney health is important to me because it was unfortunately the one organ that was not working completely since birth. Since I will have to live with this for the rest of my life, it is important for me to do everything I can to increase my odds of a long and successful transplant. This includes continuously educating myself on the current trends and issues related to transplantation, getting involved in the transplant community to make connections, and making sure I adhere and invest myself in my current transplant treatment plan. I want not only to live a healthy life, but a successful one as well.
My advice for other kidney patients is do not be afraid to conduct your own initial research and come to the doctors with questions. Sometimes this could mean seeing more than one specialist to obtain more than one opinion.
Educating oneself is the best way to reduce, or at times eliminate, the fear of the unknown about kidney disease. The more one learns, the better others can prepare themselves and better their odds for success in the future.
It is also very important to adhere to a doctor's medication and treatment plan as it could help prevent or possibly prolong kidney disease. Patients need to feel part of the healthcare team if any long term success is to be achieved. It also puts ownership back on the patient to make the appropriate efforts to succeed because at the end of the day the patients are the ones in charge of their health.