13 Mar Robbie’s Story
I was born with Alport syndrome. It runs on my mother’s side of the family. They knew when I was born that I most likely had the disease. I have two older brothers and they also have Alport syndrome and my mother is a carrier. As far as cousins and other family members, none have it that we are aware of.
I managed it all throughout my teens with a restricted diet, but things changed once I was about 21. I had to start taking a blood pressure medication and start seeing the nephrologist more often. I had been seeing a nephrologist since I was a child, but nothing major was happening. I was eventually told that I needed to start dialysis and that I was going to need a kidney transplant.
I won’t lie. Nothing about having Alport syndrome and having to deal with it is easy. However, I do believe it makes you a stronger and more compassionate individual after you have gone through everything related to the disease. As a child, not being able to eat and drink all the stuff the other kids were wasn’t easy, but it really helped me to make better choices as an adult. I’m so thankful to my mother for steering me in that direction.
Dialysis was unpleasant in the beginning (I started with hemo, eventually doing peritoneal from home), but after a while it hit me that I didn’t have a choice, that if I wanted to live I was going to have to do what was necessary. The fact that I only had to wait on the transplant list for a year and a half makes me feel extremely blessed. I am so incredibly thankful to the person who donated their organs after they’d passed. Receiving an organ from a total stranger who passed away really wakes you up.
I figured I needed to do something to honor my organ donor. I decided to start a YouTube channel (www.youtube.com/robbiesroad) and vlog about my adventures and travels around the world. I decided that she should be honored through experiences she will never get to make herself. She can live on in me and enjoy all that this world has to offer!
The biggest challenge for me was learning to accept that everything going on with my kidney health was out of my control. That there was no way I was going to stop Alport syndrome from wreaking havoc on my kidneys.
To others coping with the effects of Alport syndrome I would say always stay positive. No matter what this disease throws at you, you’ve got to deal with it. You have to deal with it because you only get one life on this planet and there’s so much out there for us! Don’t let this disease define you.
I hope that the kidney I received continues to work for a long time and that I can focus on getting my life and career in order. I really want to enjoy life and travel the world. All that I’ve had to deal with up until this point has made me want to become a nurse and help others with kidney disorders. I recently started nursing school and will graduate in December 2016. While I was on dialysis I took all my prerequisite courses for the program. I have a bachelor’s in Political Science because I thought I wanted to go to law school. Alport syndrome changed that and I think that’s the best thing to come from all of this.
I think ASF is a wonderful organization. It offers a lot of information to those who are affected by Alport syndrome and those looking for answers about the disease. A rare disease like Alport syndrome needs lots of attention and ASF helps to bring that attention to it.