My body is actually shutting down as each day passes, and I’m only going to continue to feel worse. Yet as this is all happening, people are still asking “Why can’t she work while on dialysis?”
Now that I am over 1.5 years post kidney transplant I can say that life is VERY different. Most of it amazing, but it's important for outsiders to understand that there are still struggles post transplant. It's not a magical cure from kidney disease or a full reset button to your life and freedom from aches, pains and struggles.
My blood pressure was really high, but I always brushed it off as White Coat Syndrome (fear of doctors.) I never had a doctor or nurse sit me down for a few minutes to relax then retest it. They just believed me that is was a fear of their office or the doctor. Apparently this was not the case for me.
We are more than a social media page. We are a social movement that creates and inspires change. We care about the people affected by kidney disease and those connected to donation because their stories are real. Their stories have the potential to inspire, empower and ultimately create much needed change.
It wasn't until several years later after starting my campaign to find a living kidney donor for a second transplant that I began to discover my true identity as a kidney warrior and advocate for change. Once I educated myself and realized how much bigger this topic of kidney disease is than myself and the need for much needed change, I found my new passion and ultimately my identity.
What I learned throughout the process of being tested and cleared to donate is that I would likely be in the worst pain I have ever experienced, that I was giving up something that my body did not understand nor want to give up, and that not only would it be physically demanding but would likely take a toll on me emotionally as well. What I can say is that when I donated my kidney, I felt like I truly had not given up anything and instead, I gained everything.
Dialysis patients need support in every aspect. If you are a dialysis patient suffering from such issues, speak them out loud, write them down, share them in any possible way. Lack of understanding also explains why there are so many myths and stigma surrounding this disease.
The topic of organ donation was virtually non existent in my culture. Every time I would raise the topic, my parents would automatically say organ donation is not allowed in our religion. When I would ask why? They would stutter and tell me they did not know the reasons why, but it was something that they themselves were taught from a young age.
Illness forces us to be patient. Want to resist? The disease will set a punishment. When my husband asked my recent surgeon approximately how long the transplant surgery would be his response was short and sweet. “A surgery takes as long as it needs to take.” And there it was. Forced patience. It’s a dynamic energy, quietly reminding us it exists.
When our brain and heart are working in collaboration -- we are happier, we are healthier, and we automatically express love, kindness, and care for one another.
Lets focus on this idea of shared humanity and help those in need, even if they seem at first to have no connection to you. That is my hope with the future of kidney disease awareness and the need for more living kidney donors.
My hope is that people use these words as inner strength and a reminder that their health diagnosis does not define their story.
The most important thing to remember though is that AWARENESS IS KEY. The more people that know about your need, the better your odds are of finding that one person who hears that little voice in their head saying "yeah I can do that."
That energy I felt at RISE with everyone having the same mission of positivity is what I want to transfer to Get Loud for Kidneys. We are stronger together and can make big change together. My hope is that we can RISE together to fight kidney disease.
Whether you are living with kidney disease, kidney failure, are on dialysis, have received a transplant, or are a living kidney donor, GET LOUD about your story and experience.
