Life Lessons: Thelma Barber – Charlotte Magazine

You could hardly go anywhere in the late 1980s without hearing the electrifying beat and raucous “Yeah! Woo!” sample of “It Takes Two” by the Harlem duo Rob Base and DJ E-Z Rock. It remains a foundational hip-hop track, one of the bestselling and most recognizable of all time. In 2014, 26 years after it dropped, DJ E-Z Rock—real name Rodney “Skip” Bryce—died at 46 of complications from diabetes.

Thelma Barber, who now lives in Indian Land, South Carolina, grew up in the Bronx and was 18 when “It Takes Two” hit the streets. Last September, Barber flew back to New York City for two days to witness a reworking of the track for a national kidney disease awareness campaign. The It Takes 2 campaign was launched by pharmaceutical companies Eli Lilly and Boehringer Ingelheim, and Rob Base (Robert Ginyard) agreed to participate as a tribute to his partner. Boehringer Ingelheim contacted Barber, a two-time kidney transplant recipient and patient advocate, and invited her to the shoot in Brooklyn. 

“I used to listen to Rob Base when I was young, and it was a wonderful experience getting to meet someone you idolized as a kid,” says Barber, 54. “It was weird knowing we’re the same age.”

She was diagnosed with the chronic kidney disease IgA nephropathy in 1993. In 1999, she received her first transplant after her sister donated a kidney. It lasted for a decade. Other health issues, including high blood pressure and diabetes, necessitated a second transplant in 2011—but not before she gave birth to twin boys, Trent and Matthew, now 16, with her husband, Mike. She’s on heavy doses of medication and can’t work. But she’s off dialysis and spends her time in patient advocacy for the National Kidney Foundation, Kidney Health Initiative, and other organizations.

“It’s been a challenge,” Barber says. “But there have been very good people who have helped me along this journey.”

Barber’s words have been edited for concision and clarity.

Hip-hop has always been a voice for people of color to tell their stories through that form. So I thought it was a fantastic idea to use it to take on kidney disease and educate people. Music brings us together and is a great way to get the message to communities of color.

After my own experience, I was inspired to get a message out, especially to the African American community—since African Americans are three times more likely to suffer from CKD. I felt moved to put together a video during National Kidney Month, and so I made up a rap and put it up on Facebook.

I’m an advocate for the National Kidney Foundation, and they asked if they could run my rap on their website. Then Boehringer Ingelheim contacted me and asked me to participate in their It Takes 2 campaign. It Takes 2 primarily refers to the two easy CKD screening tests, the eGFR blood test and the UACR urine test. But it also takes two people—you and your doctor.

When I went to the video set, I got to see what a whole production is like. It was a great ensemble of people, and I got to see how everything was filmed. I got to speak with (Rob Base), and I even got the opportunity to show him my video that I did post on Facebook. He was like, “OK, you’ve got some skills there.” I said, “Yes, well, thank you.”

I was officially diagnosed in 1993, but I believe I had symptoms as far back as when I was 12. I had swollen hands and feet. My mom took me to a doctor, but we lived in an impoverished neighborhood, and my government health care wasn’t good. We either had to find someone who took Medicaid or go to the free clinic.

The doctor kept telling my mom that I needed to lose weight, but I knew that wasn’t the answer. They never ran any tests. I was raised to show respect for adults, so I didn’t argue. That was the 12-year-old Thelma. The 26-year-old Thelma said, “I’m standing up for myself.” My doctor and I would sit together and have planning sessions. I was proactive and would speak up about what labs I wanted to have done and gave other input.

I had flu-like symptoms and wasn’t feeling well. Eventually, I saw a nephrologist. That led to a biopsy, which led to a definitive diagnosis of CKD. Even after the biopsy, I found it hard to believe. There’s no family history of kidney disease or related diseases. It was devastating.

Kidney disease is called “the silent killer.” That’s why early diagnosis makes such a difference. More than 35 million Americans are walking around with this disease, and so many don’t know it.

My first transplant was a living-donor transplant. My sister donated a kidney. With the first transplant, I felt relieved and excited but also a little bit numb.

I worked in radio and TV as a coordinator for NBC scheduling, promotions, and ad sales in New York City. I was able to return to work after my first transplant in 1999. But after my second transplant, there were too many health complications to return to work. There’s just no one-size-fits-all experience. It’s different for everyone.

We call our twins our miracles. I didn’t think I could have kids, and God blessed me with my boys. But after 10 years, my transplanted kidney started failing during my pregnancy. My original disease came back in the kidney, and my doctor wanted me to reduce my pregnancy by one. But my whole life is founded on my faith, and I knew God didn’t give my boys to me just to leave me and not bring us through. I wound up having to go on bed rest from the third month on.

I’ve dealt with depression and anxiety because of what I’ve been through. I let the situation control me for years. I had developed a career but couldn’t get to the peak of where I was headed. But my faith got me through. I’m filled with courage and hope and faith. I can enjoy life, and I believe others can, too.

After the boys were born, my doctor recommended that I go on multiple transplant lists from New York to Florida. And I got on every one that would take me. We packed everything up, put it all in storage, took our premature babies, and came down here. We stayed at hotels at first. I was on the list at (Carolinas Medical Center) and also Duke and Wake Forest. We moved down here in November of 2010.

We visited the Carolinas many years ago, and we actually fell in love with it and decided we were going to make this place home. Now, this was before I even knew I was going to get a kidney from here. I knew I didn’t want to raise my twins in New York.

So I was on treatment one day, and my husband went around with a Realtor. He had asked the medical transport driver while I was in dialysis, “Where would you live if you had to live down here?” And he told us to go 10 minutes past the North Carolina border to a little town called Indian Land, South Carolina.

I had my second transplant in March 2011. I had just come from dialysis. I had my 2-year-olds running around, and the phone rang. It was the woman from the transplant center at CMC. She said they might have a kidney for me, but they had to run some more tests related to cross-matching. 

An hour later, she called back and said to go ahead and pack and come to the hospital. I was admitted and had the surgery the next night. The kidney came from a deceased male donor. His kidneys saved two lives, mine and another woman’s.

The second time was more difficult because my immune system was highly sensitized. I was in the hospital for three days. The recovery was harder and took longer. I had a rejection episode. They did treatments, infusions of medications. I remember going through it and being attached to a machine to keep my kidney going. This was off and on for about a year and a half until I stabilized and was finally out of the woods.

Having the transplants saved my life, but transplants cause other health issues. All organ and body systems are interconnected: cardio, renal, metabolic. My relationship with my doctors has made all the difference. We are partners in my care. Before my first transplant, my nephrologist was concerned about everything I was going through and educated me throughout the process. He not only educated me, he walked alongside me.

When you’re in these types of situations, remember that you have the right to ask questions. Be empowered to take charge of your health. You get one life; do your best to maintain and keep it.

I have to take different medications three times a day—more than 20 pills each day.

You have to make your health a priority. I adopted a healthier lifestyle. This meant eating healthy and exercising 30 minutes a day. When you’re on dialysis, you have to be stringent about watching your fluid intake. You also have to make sure to take care of your mental health.

It’s OK to not be OK. You have to be willing to take that first step and seek out help. Counseling helped me navigate so many things. I have to be well physically, but also in my spirit and soul. I make sure to do self-care. There are times I find quiet time just to be. Other times, I listen to music. 

I will be grateful to my last breath. I have a voice to stand up and advocate for people who can’t. But I strongly encourage people to advocate for themselves.

Allison Futterman is a writer in Charlotte.