By ROBYN H. JIMENEZ
The Dallas Examiner
Nono Osuji is a local actor, writer and activist – and she’s in the midst of the fight of her life.
“I have systemic lupus, which I was diagnosed with 12 years ago. And at first, it manifested like lupus does as a rash. I have the hair loss. I have the fatigue,” she recalled.
Systemic lupus erythematosus is an autoimmune disease that causes the immune system to attack the bodies healthy tissues. It can affect the joints, skin, brain, lungs, kidneys and blood vessels, according to the Centers for Disease Control and Prevention.
But that’s not all she learned that day. The doctor told her that it was affecting her kidneys. However, she said she didn’t take her kidneys’ diminishing functions seriously at that time.
Within the next two years, she began to experience extreme fatigue and would sleep for up to four days at a time. She couldn’t eat, and her urine output had almost completely stopped.
“I thought I was dying. I was like ‘Ok, I guess this is death’ because and I heard your feet curl when you start to die. So, I was looking at my feet. I was like, ‘Are they curling?’” she said.
She was admitted to the hospital and diagnosed with lupus nephritis, which is kidney damage caused by the SLE. Kidney disease is determined by the level of creatinine – a waist product in the kidneys. The higher the level, the worse the function of the kidneys. However, the level can be different for each person depending on various factors. Other symptoms include waking high blood pressure and swollen ankles. Close to 50% of people with lupus will suffer from kidney problems.
“There are five classes,” Osuji explained. “The first time I was hospitalized, I was class two, so they’re like, ‘Okay, it’s not so bad. Not as bad as we thought it was.’”
However, a year and a half later, her kidney function continued to decrease. Once again, she was feeling extreme fatigue. But this time she had such excruciating abdominal pain that she would scream out in agony.
She was admitted in the hospital again. The doctor informed her that her creatinine level had continued to increase. Blood and high amounts of protein was also detected in her urine. He diagnosed her with stage four kidney failure.
“That was in 2015. My doctor was like, ‘You have about five years with this kidney and then it’s going to go.’”
Sick and tired
At one time, Osuji was working as a speech therapist, going on auditions, was active in her church, lead in the drama ministry and actively dating. Overtime, she had to decrease her work hours, spend less time doing the things she loved and dedicate more time to medical appointments and treatments.
Currently, she spends most of her time focused on surviving.
With no more than 4% of kidney function, Osuji said she is in stage five – complete renal failure – and on dialysis. She began dialysis at a center three times a week for four hours each treatment. The treatments were very intense and would make her weak. This meant she was spending three days at the clinic and each day in between recovering from the effects of dialysis. She said the nurses would compare the effects of dialysis to running a marathon without training for it.
Eventually she was approved to start dialysis treatments at home. Doing her treatments at home allowed the dialysis machine to filter her kidneys at a much lower rate. This meant that it would be an easier process with less recovery time.
She started out doing the treatments for eight hours each night but has since then increased it by an hour and a half because her kidney function continues to decrease.
“For whatever reason, I’m not filtering out the right amount or enough toxins out of my body and at home,” she explained. They’re trying to get a system for me that could at least get me to like the minimum of the goal.”
Though she said she’s happy to have more free time in her day, her declining health has not allowed her to fully take advantage of the free time.
“It’s still tough. I’m not getting good sleep and I’m having stomach issues. I’m not meeting my goal. And the machine beeps and wakes me up every night,” she revealed, adding that she has been vomiting every night and her level of fatigue is excruciating.
To describe her fatigue, she used what is known as the Spoon Theory: using spoons as units of energy, it describes how people with chronic fatigue must conserve their energy in order to complete task. For example, the average person may only use one spoon to wake up, get out of bed, take a shower and get ready for the day. While a person with chronic fatigue may require two or three spoons for each task. And if people generally only get 20 spoons per day, a person with chronic fatigue could use up close to 1/3 of their spoons before they even leave home.
Osuji expressed that she is sick and tired of being sick and tired. She must conserve her energy for doctors’ visits and important errands. And she takes naps when she needs to conserve her spoons. But all of this is beginning to wear on her both physically and emotionally.
“I’m conserving my energy for things I can do. And I would say I’m not the best functioning depressed person right now …” she explained. “But all I can say is I’m trying.”
The big ask
Osuji is now on the registry for a kidney transplant. In Texas, the wait time is estimated to take between 3 and 5 years. However, it could be longer for African Americans, which account for close to 28% of patients waiting for a new kidney, according to the Organ Procurement and Transplantation Network.
In hopes of speeding up the waiting time, Osuji posted a video on the social media with an update on her kidneys and her need for a transplant from a living donor.
Calvin J. Walker, local filmmaker and artist, is a dear friend of hers. The two met several years ago working on a film. He said he reached out to her after he saw the video and wanted to create something more appealing that might have a broader reach. He went back on social media to request volunteers to donate their time and equipment to produce the short film.
“We didn’t have a lot of people who responded to the call the way I wish they would have,” he revealed. “But I call two friends of mine. One I’ve been knowing for over 20 years. His name is Dwight Williams. He is a soundman extraordinaire. He has worked for everybody from the NBA to Deion Sanders’ new show.”
Walker said it was like divine intervention. Williams was completely booked except for the only day available for them to shot to film. Walker said Williams told him that someone else had called to book him, but he felt the need to keep it open for some reason.
“And then a good friend of mine named Mark Ragunton came on to be our cinematographer. Mark is in demand, traveling all across the country to shoot for people. So, we had a ragtag crew of exceptional professionals. Thank God for good friends.”
Osuji agreed. She called on a good friend of hers, fellow writer Ryan Glen, to help her find a location to shoot the film. That friend knew the owner of the Lumen Room in Fort Worth, who agreed to donate the space to them to use.
The shoot, which took place on May 23, allowed Osuji to share her story and explain her need for a living kidney donor. He partnered with Jasmine Shanise Gammon to produce the film. The 6.5-minute mini-doc was filmed with one camera, which took about 1.5 to 2 hours to complete. Emmy award-winning editor Jerod Couch, the post-master, then edited the film.
The video was completed and posted July 21 as part of what Walker termed, “the big ask.” He posted it on his Facebook page with a note asking viewers to share her story and use the hashtag #nonosstory. But he also included another call to action.
“If you’re a match, please pray about being a donor,” he wrote. “All you have to do is visit www.livingdonordallas.org and type in “Cynthia Osuji” to start the process.”
Walker said at the end of the day it wasn’t about fame and no money was involved.
“There is only one outcome, and that outcome is a donor. That is that’s the biggest, highest hope and that is what I am believing for. Putting it on socials, stalking celebrities – I’m already in the midst of stalking Nick Cannon,” who Walker explained has suffered with lupus and has had a kidney transplant. He hoped that reaching out to celebrities to share the video would give it a broader reach, increasing his dear friend’s chances of a transplant.
The video can be found on all The Dallas Examiner’s Facebook page and by searching the hashtag.
Osuji hoped that the video would help her, as well as other people on the transplant list, receive a kidney.
“I’m A+ blood,” she added. “So, we do have to match with that. I think about 33% of the population is A+, so that gives me hope.”
With the thought of making a full recovery one day, she perked up a bit when discussing the first thing she wanted to do after recuperating from her transplant.
“Okay, so I was taking swim lessons. And because I have this port, I cannot get in any sitting water. Go back to my swim lessons. And I’m going to the ocean … the Pacific because that is a beautiful ocean. I went to Hawaii before I got on dialysis. I was just trying to live because I knew life was about to change drastically. And we swam with dolphins, and I did not do a lot of swimming. I did a lot of almost drowning,” she said with a slight smile. “And I was like I’m going to redeem myself.
“So, the Pacific – maybe something off of Hawaii or off of Bali. Yes, I’m going to be on beaches.”