With precious few organs to go around, there are objective measures doctors use to determine if a patient is a candidate for transplant. Are they fit enough for surgery? Are they smokers? But other considerations are not as easy to measure. Is the recipient able to comply with the strict regimen that comes with a new organ?
For patients caught in the struggle, a local doctor steps in to help break down barriers and bring patients steps closer to the life-saving surgery.
For Vanessa Brown, it has been a slow go. She has a bad knee keeping her down. The 64-year-old said her lack of mobility was a strike against her at an urban transplant center, where doctors took her off the wait list for a kidney.
“The transplant team didn’t want to do the kidney transplant until I had a knee replacement,” she said. “The orthopedic surgeons didn’t want to do the knee replacement until I had the kidney transplant, because of course you heal better when you can move. And so on.”
Brown was stuck. And then Dr Dinee Simpson offered a solution.
“She said, ‘Well let’s see if we can’t get you walking on your own again,’” Brown said. “And that’s why I’m taking the therapy now. That was just so marvelous that she thought of that.”
Simpson’s desire to help patients like Brown grew from watching so many others turned away. It was an observation the transplant surgeon made during her training.
“There are a number of barriers that black patients face when they are trying to access the transplant process,” Simpson said. “One has to do with trust of the healthcare system and of the information they get. The other is of the healthcare provider, knowing the cultural background and social background of the patients they are treating, and being able to adapt to cater to their needs.”
And that’s how AATAP — African American Transplant Access Program – came to be. Since Simpson started the initiative at Northwestern Medicine, 15 patients have received donor organs.
“I mean even if it were just one, it’s something. It means the world to that person,” she said.
Mecca Muhammad calls the rural community of Rochelle, Illinois home. It is a 45-minute drive to the closest dialysis center. And if she wants a new kidney, she has to show up for dialysis three days a week.
“So I’m just working with what I got, the car that I have,” she said.
It took Muhammad seven months to save up for the vehicle that now transports her to appointments. It was a risky move and all that time without dialysis took a toll.
“By the end of that seven months, I was so toxic like everywhere,” she said. “I was swollen, toxic bumps everywhere itching. But I made it to get the car and got back to dialysis.”
It hasn’t been easy for the 45-year-old, who was diagnosed with kidney failure while pregnant with her daughter in 2002.
“When I left the hospital after my kidneys failed, after I delivered her, the fluid was so much on me if I was sitting on a recliner with my feet up, the fluid would go up,” she said. “And then my feet would feel good, but then I’d be packed with fluid up here.”
“You have a young woman who is in her 40s, who is the sole provider for her two dependent children, and you are telling this woman she is not a candidate because she’s missed dialysis appointments,” Simpson said. “When you look under the surface, the reason why she’s missed those appointments is because she is attending a parent-teacher conference or she’s taking her sick child to the doctor. And if you think, if this woman were to have gotten transplanted how her life would change, how she would be able to better provide for her children and for herself. It is devastating to think that patient would be considered not be a candidate somewhere.”
For 14 years now, she’s maintained a regular dialysis schedule. And with Simpson’s help, finally had other tests to make sure she’s healthy enough for transplant. Now, Muhammad’s just waiting for the call from the hospital.
“Got my bag packed, ready,” she said. “I’m so tired I can’t even describe. Just hoping this is the end of the road.”
The long road to transplant is behind Ramiyah Johnson.
Dialysis has been replaced with multiple weekly blood draws to make sure the new kidney she received in April is doing its job. It was a six-year-wait for Johnson, a period that included her high school years.
“I really was the only one in my entire school that was sick and it was embarrassing,” she said. “But once I joined dialysis it was like a whole other community and I wasn’t alone. You felt so much hope.”
The 23-year-old found Simpson after she was dropped by another transplant team in Chicago.
“t was the most devastating day of my life, because at that moment I knew we were going to be in limbo,” her mother Reyanna Johnson said.
“I was dealing with panic disorder, and I was temporarily taken off the transplant list because my mental state,” Ramiyah Johnson said.
“The main thing with Ramiyah (was) she was afraid she was going to die,” Reyanna Johnson said. “As a normal person how would that make you feel? If I go to sleep, I might not wake up. I’d be panicking too. That doesn’t mean I’m mental. That doesn’t mean I have a problem. That means I’m afraid.”
Desperate to find another doctor to help her daughter, Reyanna Johnson called Northwestern.
“We just kept telling our story and I’m like, ‘We don’t have nowhere to go. My baby ain’t done nothing wrong. She takes her medicine every day. She’s in dialysis three days a week. She can’t breathe. She can’t sleep,’” Reyanna Johnson said.
Once the donor organ was transplanted they noticed an immediate change.
“My skin color was different. My gums started turning pink. A lot of things, little, slight changes that I noticed in the first few hours and first two days,” Ramiyah Johnson said. “I can’t even express how happy I am. I feel like everybody deserves a chance to experience a transplant.”
Simpson is encouraged by the early success of the program the number of African American patients getting listed is up 18 percent.
For more information about AATAP on their website.