Amie Rooze – Humans of Kidneyville Act for Kidneys Initiative

Humans of Kidneyville is an Iya Foundation Act for Kidneys Initiative that aims to raise awareness of kidney disease and the need for organ donation by bringing to light the plight and needs of End Stage Renal Disease patients by sharing their kidney health stories and experiences.

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Name: Amie Rooze
Age when kidneys failed/diagnosed: 31. I was diagnosed November 20th, 2014 with Stage 3 Chronic Kidney Disease. I am currently at Stage 4.
Cause of Kidney Failure: Morbid Obesity. Another contributing factor is that when I was growing inside my mother, one of my kidneys developed in an incorrect spot…in my pelvis. Doctors aren’t sure when exactly my kidneys started to fail, but I have somewhat of an idea. When I was 21, I received my CDL class A. I was living in Henderson, KY at the time, but doing a job orientation in Tulsa, OK. During my DOT physical, the doctor notice I had protein in my urine and decided to get me tested to see what was causing it. I ended up being misdiagnosed with a horseshoe kidney. A horseshoe kidney is when both kidneys fuse together. The doctor said the fusion was the cause of them spilling protein. Hence, for ten years, whenever I had to give urine sample, and the doctors noticed protein, I would tell them that I had a horseshoe kidney, and that would be it.
Transplant: As of right now, I haven’t had a transplant. I am working on losing weight, so I can get on the list.
Advice for people without kidney failure: Protect your kidneys as much as possible. Stay away from medicines like Advil, Aleve, Ibuprofen, Motrin, etc. These medicines are called NSAIDS and will damage your kidneys. Once you’ve damaged them, there’s no undoing it. Make sure you get regular checkups and your yearly labs are done. Stay healthy. Had I known that being overweight would have caused my kidneys to fail, I would have dropped the weight.

Advice for someone who has been newly diagnosed with kidney failure: You are going to have good days and bad days. It’s okay to cry. It’s okay to get mad, and think ‘why me’. Know that there’s a reason WHY you got kidney disease and it’s because we are warriors. We are strong, and we can overcome this. Be your own advocate. Take a kidney smart class. Find a nephrologist who will be there for you and listen to them. Its ok to ask questions, and it’s okay to be tired and not wash those dishes in the sink because you don’t have the energy.
Would you say there’s Hope after diagnosis? There is hope after diagnosis. How you control YOUR kidney disease is up to YOU.
What’s the most difficult aspect of living with kidney disease? The hardest part of living with kidney disease is the diet. I miss eating my favorite foods like greasy cheeseburgers and loaded French fries…but it’s my diet that got me here.
How important is having a support system? You definitely need to surround yourself with some great friends; and I am not talking about a pint of Ben and Jerrys. Join support groups. There’s some on Facebook. Reach out to those who are also battling kidney disease. You are definitely going to need some strong friends to wipe away your tears, listen to you vent, and maybe even have that friend donate their spare kidney. If you ever need a friend, I am here. Just shoot me a message, and I’ll be that friend.