I never thought living with chronic kidney disease would be the hardest thing in my life. Most people don’t understand that having a chronic illness can feel like a full-time job. This is a feeling I have had as long as I can remember. I was born with chronic kidney disease. I got followed by the kidney team at BC Children’s Hospital until I was 18 years old and then transferred to St. Paul’s Hospital (Adult Care).
The hardest part of being in adult care is that the doctors and nurses expect you to know how to “be independent” like book your follow-up appointments, do your blood work a week before you go to clinic, refill prescriptions, and do weekly check in with the nurses by phone. At Children's hospital this was all done for me. When I came to St. Paul's hospital I got judged right away. Nobody liked me because of my poor attitude. They didn't get my sarcasm and jokes. They assumed right away that I would be a rebel because most people my age have the bad rep. Things like not showing up for appointments, not being compliant and not taking medication when prescribed. In 2015 I was starting to show signs of stage 5 kidney failure. After being in and out of the hospital a couple times over the course of 3 months the doctors talked about doing dialysis. At first, I was against it because all I heard from people I know who went through it were bad things and I didn’t get a lot of information about dialysis. On July 27, 2015 I started hemodialysis.
I want to get loud because I found out through kidney disease and hemodialysis that I had a passion and career with helping out kidney and dialysis patients. January of 2017, I got the opportunity to take a peer support training course so that I can be a Peer Support Worker for the dialysis unit where I did treatment and also, I got a job at BC Children’s Hospital to help with Teenagers transitioning to Adult Care Hospital. I love my job because I went through a hard transition and I don’t want any person to go through what I’ve been through. Especially being the youngest person at dialysis.
I’ve been working on a lot of things and trying to be active on social media for kidney awareness. I’ve been working on having a Peer Support Training course that leads into Paid Contract after doing the training, working on getting a social workers degree, as well as making a transition clinic so that when young adults transition to adult care they will get education on how it works and what to expect in clinic. I'm also working on making my own foundation or non-profit organization. My passion is to help the young adults and teenagers with kidney disease or dialysis. We have none too little resources and I want to change that. We live in a world that most health professionals judge or assume right away just because we are the youngest ones.
I hope that I can create change and be a role model for the younger generation. I’ve learned everything by myself and had to be a strong and independent person. If it wasn’t for kidney disease and especially dialysis I wouldn’t be a strong kidney warrior. I want to make a difference because no one should go through what I’ve experienced. Life is still throwing me challenges and bumps in the road but that doesn’t stop me from doing what I love to do. I still keep a positive attitude when things get rough and I surprise myself with how calm and upbeat I still am. I’m excited for what’s to come with the Get Loud for Kidney’s Advocate Program. I see a big opportunity to help my kidney community out and also with Get Loud.
Read Rozelle's Kidney Story here
Follow her on Instagram at dialysis_princess
Location: Vancouver, BC Canada