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: