I was only 16 years old when I was diagnosed with chronic kidney disease (CKD) – a diagnosis that has affected me in ways that I could have never imagined. Now that I have been a kidney patient for more than 20 years, I realize that I didn’t fully grasp what was really going on in my body when I was diagnosed. At first I didn’t think I was sick, but it didn’t take long to realize how wrong I was.
As I reflect on my journey with kidney disease, I remember how hard the CKD diagnosis was for me. I felt embarrassed and ashamed. As if being a teenager wasn’t hard enough, I had to undergo peritoneal dialysis. All I wanted was to be healthy and hang out with my friends. Even though my friends were still there, I felt like my life was passing me by because there were so many things I was unable to do. I was not comfortable telling everyone that I had kidney disease and was on dialysis. When dating one guy in particular, I was scared that my tubing was going to show through my clothes or that he would notice I was sick from just looking at me. When I think about that now, I can laugh at it because I am comfortable in my own skin.
One of the most valuable things I’ve learned during my journey is how my disease affected not only me, but also my family and loved ones. Living with kidney disease is not easy, and the emotions I went through were very visible to my family and friends. I think what hurt them the most was not being able to help me or make me feel better.
Looking back, I realize that I may not have been the easiest person to deal with at that time. I felt alone, even though I was surrounded by a bunch of love. I can remember lashing out at my mom when she asked what she could do to help me. It wasn’t her fault; I didn’t know how to express a lot of what I was feeling because it was all so new to me.
For me personally, part of the healing and acceptance process is talking to my family about kidney disease and how it has affected me. Believe me, it’s not an easy process. When you are living with a chronic illness, you already feel limited and don’t want others to feel sorry for you because it makes you feel less. I have to remember that my family wants the best for me and wants to help me. This is the part that I had a hard time with. It wasn’t that I that I didn’t want the help, I just thought I could do it all on my own.
My selfish way of thinking ended when I had a family member tell me that sometimes the only thing that they have to offer is their help because they can’t take away what I have to go through. When she told me this, I realized that not accepting their help was actually making them feel rejected. I have since learned that my family is the one that has supported me most. You cannot manage your disease without a support circle.
I have also learned that by being open about my fears, what I am feeling, and whether it is good or bad has helped my family tremendously in understanding my disease and me. Being open and communicating my needs to my family and friends has made it easier because they know I am not as fragile as they may think. By educating my family they are less anxious when I get sick or have to be admitted into the hospital. It made it easier when I had to go through the process of needing another transplant.
I received my first transplant in March 1995. When my transplanted kidney began to fail in 2010, I remember it like it was yesterday. I was walking into work and I could tell something wasn’t quite right. By the end of the day, I was on the phone with my nephrologist who was telling me to go admit myself into the hospital for a kidney biopsy. I went back onto peritoneal dialysis and transitioned to in-center hemodialysis. It wasn’t until my kidney failed that I realized that I was sick and could potentially have multiple transplants. I know it may sound funny, but I was so good at managing my disease that I didn’t consider myself to be sick.
I was blessed to receive a second transplant on July 6, 2012. This transplant was extra special. It was a living-donor, and it was from my husband, Rodney. He is a jokester, so when he told me he had been tested but wasn’t a match I believed him. I was just grateful that he wanted to get tested. Well, the joke was on me because he was a match! His gift to me is something that I will never be able to repay and has given me a second chance at life.
Over the years, I have learned a lot about kidney disease and how to live with this chronic condition. I always tell people that kidney disease doesn’t define who I am, but rather it tells part of my story. I hope in reading about my journey, you can learn from my experiences and find ways to support those in your life who are living with kidney disease.
Meshia Adams is the founder of Meshia’s Hope, a website that aims to educate, empower and raise awareness about kidney disease. In 2014, Meshia received the American Kidney Fund’s Hero of Hope award, given annually to an individual with kidney failure who is making a difference in the community.