J. Harrison Ghee Isn’t Letting Kidney Failure Stop Them From Living

Listen in as J. Harrison Ghee talks about listening to your body, asking for help, and why they hope their story inspires more people to learn about living kidney donation.

I was very nonchalant about it. It was something else to add to my medical history. I wasn’t invested enough in learning about kidney disease despite it being so prevalent in my family.

Both of my grandmothers were on dialysis, and my mom received a kidney transplant in 2012. My father also had kidney disease and passed away.

But I’m active and young. I thought to myself, “That won’t be my journey.”

1 in 3 people are at risk of kidney disease. Take our one-minute quiz to find out. 

In 2024, my nephrologist told me we needed to talk about next steps. My kidneys were failing. I needed to prepare for either dialysis or a transplant.

I was shocked and literally had a flight to Tokyo scheduled the next day. But it was the wake-up call I needed to advocate for myself and learn more about my health beyond receiving information from my providers.

That’s when I started educating myself about the kidneys and kidney disease.

Learn more about kidney failure. 

Kidney disease is silent, and for a long time I felt fine. Looking back, I now know that I was experiencing symptoms but didn’t know it. For me, it was ulcers in my feet, dry skin, and swelling.

When I experience these symptoms now, I look at what I’ve been eating and drinking, making changes as necessary.

My goal is to get a preemptive living donor transplant before I need to start any type of dialysis. That has forced me to be very honest with myself, take my medications, and change my relationship with food—how I eat, when I eat, and what I eat—to maintain what kidney function I have left.

This isn’t a diet, though. It’s a lifestyle change. I understand my body better than ever and the importance of following a kidney-friendly diet.

I haven’t been secretive about my diagnosis. I would bring it up casually, and it would shock people that I was still working. But I felt like if I stopped living and working, I would fall apart. If I surrendered to it in that way, it would consume me.

To keep working, I have to advocate for myself. I may need a day off here or there, but I don’t abuse the flexibility.

I’ve also learned to put my ego aside.

For example, I’m about to go on tour for Oh, Mary! I start the tour as Mary’s husband but take over as Mary later. Mary usually wears a heel. I’m known for “fabulousity,” so I wanted to go with the heel.

But the reality is that kidney failure shows up in my feet. I need to put my ego aside and wear the flat. If the audience is worried about a heel, girl, please. It doesn’t take away from the performance, but it does help protect me.

I also had to learn to be less independent and ask for help. I’m so grateful that I have friends who, even without me asking, have taken things off my plate. 

Help through community is key.

Join an NKF Kidney Walk and find your local kidney community while raising funds to fight kidney disease.

My friend got tested early last year. We were a great match. Unfortunately, their blood pressure test came back too high, so they couldn’t continue as a donor candidate.

But I’ve also had strangers reach out to donate since I released my story more publicly. Through this, I’ve learned about paired kidney donation, where donors who don’t match their recipients “swap”. 

It’s not just this linear waitlist process where I’m inching forward. There are so many possibilities for it to happen in all sorts of ways.

Learn more about becoming a living donor.

Living kidney donors can live a happy, healthy, whole life. It doesn’t make you any less of a healthy human. It just helps you be beneficial to someone else’s life.

You’re down for a second because your body has to reset, but you get to press on as a literal lifesaver.

It still blows my mind that people are willing to donate altruistically, or without knowing their donor.

Watch videos made by real living kidney donors to learn more. 

In the Black community, we’re taught that you don’t look like what you’re going through. Don’t show it because it’s seen as a sign of weakness. 

Kidney disease affects so many people, and in the Black community, we make up about 27% of the people who need organs, and yet only 13% of us are the ones donating, because of so much fear, stigma, and shame.

That’s why we’ve got to get back to community care. I want to help people feel more confident sharing what they are going through. 

For me, it started with building trust and communication with my healthcare provider. Having someone with that knowledge to point you in the right direction is a great place to start. 

Also, trust your friends and your close circle to hold you up and share the fullness of your experience. Let them help you. It isn’t a sign of weakness. You’re just in a place where you can’t do it alone. So don’t try to take it on alone. That’s what weighs you down and makes you feel like people don’t understand. They don’t understand because you’re not making space to bring them in and educate not just yourself, but those around you.

Kidney disease is all-encompassing, and it can feel lonely. But there are so many resources for people to be supported and to continue living a happy life.

Don’t go through kidney disease or the living kidney donor process alone. Get matched with an NKF Peer mentor. 

This is not just this moment of, “Well, I can’t wait until I get this kidney and I don’t have to think about it ever again.” This is the rest of my life

I never imagined being an influencer of organ donors and kidney health, but it fits in a way. It has been in my family and in my life for so long. 

It’s a part of my story, and I don’t want to deny it. If I can change even one life by sharing my story, I’ll be happy. 

Ready to take the next step in living donation? Learn how to connect with a transplant center.