A kidney transplant survivor shares what she wishes every family knew before the diagnosis came
Most people learn about kidney disease when it is already too late to prepare, Sharron Rouse was one of them. Diagnosed at 31 with FSGS, a condition tied to the APOL1 gene, she had no family history to warn her and no community to turn to. Through Kindness for Kidneys International, she has spent years making sure others do not face that same silence.
What is a patient advocate?
A patient advocate is one who takes the reins of their healthcare. They take on ensuring that they are asking the questions of their doctor. One who is vigilant about their health, so they’re not leaving it in the hands of anyone, but they know that it’s up to them to get in the driver’s seat of their healthcare.
That means speaking up, asking questions of their physicians. It means if they sense that something isn’t right, doing additional research, or going to get a second or even a third opinion if needed. Essentially helping to participate in their own rescue.
How did your health journey begin?
At the age of 31, I found myself in an emergency room being diagnosed with focal segmental glomerulosclerosis. Essentially, I was diagnosed with kidney failure. I was a school counselor at that time and woke up with swollen legs. FSGS is when a part of the filters in your kidneys become scarred.
I didn’t know of anyone that had kidney failure or kidney disease in my family. My daughter was 5 months old and I had just gotten back to work, so we assumed my body was adjusting. When I got to the emergency room and they told me, we were both just blown away. Life as I knew it changed in September of 2006.
I spent about 8 days in the hospital. Originally they thought it was lupus-related, because I had been diagnosed with lupus in 2003. They did the biopsy and it was determined that I had FSGS kidney disease.
What moment pushed you toward advocacy?
During that first hospital stay, one night a nurse came in and asked me why I was taking a certain medication. I didn’t realize I was taking it. I just thought that me being in the hospital, the experts know what to do. They’re coming in here to do what they’re supposed to do.
She said, “no you don’t need to take it anymore.” Something clicked that night and I realized you can’t just sit in this hospital and not ask questions. Yes, they are the experts, and they’ve gone to school for this, but you play a critical role in this process. You should be asking questions, asking about side effects. Many patients don’t realize that. You go to the hospital, you are hospitalized, and you don’t realize the important role that you play on the team.
What are the first steps after a kidney failure diagnosis?
The first thing I would suggest is stop and pause. Take some time to really digest. Our first reaction is to react, to be devastated, to start calling people, and almost essentially planning our funeral. Take a breath, digest it.
I always suggest getting a second opinion. People are misdiagnosed all the time, so try a second opinion just to make sure this is what you have, and begin to do your own research, talking to other doctors, talking to other people connected to larger organizations.
Once it’s solidified that this is what’s going on, you go through a grieving process whenever you’re given devastating news like kidney failure. In the beginning I was in denial, shocked, angry, but once I came to a place of acceptance, I made a decision that this was not going to be the end of my story.
The third thing I would suggest is make up in your mind what this journey is going to look like, and what you’re willing to commit to do to get to the other side. Decide what you want the end of this journey to be, and then put yourself on a path to get there.
What options exist beyond dialysis?
I started working with my social worker to get me listed at the local transplant center. Once I started having those conversations with my family, my sister said, “just tell me what I need to do, and I’ll go and do it. I want to see if I can be your kidney donor.” I gave her the number to the transplant center, and she followed up and started her lab work. We were found to be a match.
We went through a lot of obstacles. It wasn’t as easy as she’s a match, let’s get to the operating table. But we learned a lot about transplantation in the process. Fast forward to 2013, we did make it to the transplant table, and I was able to get a kidney from her on December 2nd of 2013.
Why does kidney testing matter for future generations?
Gone are the days that we are leaving the next generation to start from ground zero. That starts with us getting tested. I didn’t want my grandchildren to have to start from ground zero with kidney disease because they inherited something from my lineage.
Am I more concerned about financially leaving a legacy as I am leaving a health legacy? Because if they aren’t well enough to enjoy the riches, then what have I really left them? If they know that mom or grandmom was predisposed to this, it saves time, it saves heartache.
We have to share that information with the next generation so that they can be proactive in their health. It starts with us being a part of testing, being a part of clinical trials. If we don’t have a say in the matter, there are never going to be treatments that are appropriate for us as a community.
What does your health regimen look like?
I drink a lot of water. That’s my drink of choice. I always tell people, start small. Even if it’s, hey, I drink a soda every day, I’m going to skip and have it every other day, until you can get yourself to a place of not having them at all.
Staying away from processed foods. I always look at whether this food grows. If it has a good shelf life, it probably is not that healthy. I’m working on sleep, but I know sleep is a huge part of the journey. I try to get at least 8 hours every day, because that’s important in the healing journey.
Lots of sleep, lots of water and staying away from processed foods are a huge part of it. Being around people that I love and doing things that I love really does something to you. We weren’t created to do life alone. I also seek to get in steps every day. My goal is 10,000, but some days are better than others. Moving my body every day is important. I can tell the difference when I have not gotten in those steps.
What does being a kidney warrior mean to you?
Many times, we don’t want to be referred to as patients all the time. When someone says, oh, you’re just a patient, it implies that I don’t have anything beyond that. When you hear the term warrior, it makes you want to show up as just that, a kidney warrior.
When people think about patients, they think about people that are downtrodden, just sick, in a bed, and it couldn’t be further from the truth for a lot of kidney warriors. We’ve had something happen to us, but we’ve decided that it’s not going to define us. Kidney warrior is about defining who we really are. We are warriors in this fight against kidney disease.
For families looking for resources, community, or guidance on kidney disease and genetic testing, Kindness for Kidneys International is a place to start. Learn more at kindnessforkidneys.org.