A Hard Lesson Hard Learned 

By Tanner Edwards 

I would like to address the importance of remaining compliant when it comes to taking all your medications–and the important lessonI learned the hard way

When I was younger my mom always made sure I took my medicine. Since I’d taken medication my entire life, taking it was normal to me. When I started high school, it became a huge inconvenience. I hated having to stop what I was doing to take my meds, especially if I was playing sports with my friends. I also got tired of having a stomachache when I went to school, and I was jealous because my friends never had to worry about taking medicine.

So one day I skipped a dose of medication and I didn’t feel any different. That turned into more skipped doses, until I just stopped taking my medicine all together. I was 14 years old and I figured I knew everything. I thought to myself, “I don’t feel sick. Now I’m just like everyone else.”

That summer, I received my first transplanted kidney from my dad. It was a planned transplant because my creatine was rising. I was never on dialysis – putting someone so young on dialysis if it was unnecessary didn’t make sense. The transplant went well and all I remember was everyone asking me if I felt better. I didn’t feel sick to begin with, so my answer was always, “I don’t feel any different.”

But now, I had to take new medicines, such as antirejection meds and pills, so I didn’t get infections. About two years after my transplant, I stopped taking my transplant medicine consistently. I would take it, then skip a couple of doses, and then start it again. I was young and stubborn, and very lucky that my kidney didn’t fail immediately. My mom would be in the kitchen with me before school and I would pretend that I was taking my medicine. Instead, I would hide it in my mouth or pocket, and then hide it in my room or throw it away when I got to school.

This continued when I started college. Now that I was on my own, the last thing I thought about was taking medicine. I was more concerned about going out with my friends and having fun.

College wasn’t really for me, so I got a job. Things were going well until I started having bad headaches and became very moody for no reason. I figured it would all go away and never really thought much about it until one day I had such a severe headache I felt like crying and told my mom I needed to go to the hospital. My blood pressure was 260/168 and I was lucky I was still alive. My creatine was 9.2 and I was told that I would need a new kidney and was put on dialysis.

I had my first tranplanted kidney for 12 years, which is a miracle since I took horrible care of it. And I had wasted my dad’s kidney, which I feel bad about. I was in the hospital for 24 days and I felt terrible. I was then on dialysis for two years, which nobody should have to experience because it’s not living, it’s just keeping you alive.

I received my mom’s kidney on October 16, 2014 and have felt amazing ever since. I will never miss a dose of medicine again. Going on dialysis actually woke me up and showed me how important it is to take your meds. I never want to feel that bad again.

I believe that younger kids who take cystinosis medications should be taught what these medicines do for them, and why they are so important to them. I always felt that when a doctor told me to take all these pills and didn’t take any himself that he didn’t know how I felt. Education is very important with younger kids. I think that if I had heard all of this from an older cystinosis patient, I might have listened and I might still have my first kidney.

I would gladly talk to anyone who is struggling with being compliant because I can relate to him or her, and think I can help them out. Today, I feel great and have a great outlook on life now – and I will never miss any more doses of my meds.

Becoming a Kidney Donor

Many people become donors because of a family member or friend in need. However, non-directed or anonymous living donations can help those unable to find a match within their support community.
The National Kidney Foundation – www.kidney.org – can provide detailed information and resources, but here’s an introduction to the process of becoming a living donor:
  • Contact your local hospital or dialysis center to start the process. The National Kidney Foundation has a search engine to help locate a center near you. The first step to getting on the list of potential donors is an appointment to complete paperwork.
  • You will be asked to provide proof of your age and other information. Sometimes you’ll be assigned to a counselor for an interview to discuss the process and commitment.
  • A doctor will take your complete medical history. Blood will be drawn to type and match to six tissue types necessary for an organ to be the best match. Additional tests will be performed to check if your kidneys are functioning properly.
  • If you are approved, you will be put on a donor list. When and if your kidney is needed, you will receive a call, giving you the chance to provide someone with the gift of life.


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