‘An angel following her’: a mother’s organ transplant story | The Homepage

Teaira Collins (left) and daughter LaNae Wallace on Feb. 9, 2023, the day of Ms. Wallace’s second kidney transplant. Photo courtesy of LaNae Wallace

By Teaira Collins, as told to Managing Editor Juliet Martinez

Editor’s note: February is Black History Month and Feb. 14 is National Donor Day, honoring organ, tissue and blood donors. The Homepage presents two articles this month on organ donation and the importance of donors who come from African American and other minority communities.

My daughter LaNae was born with a rare kidney disease called autosomal recessive polycystic kidney disease. On the day she was born, she was given 24 hours to live. She has surpassed that and turned 32 on Dec. 22. She received her first kidney transplant when she was just 14 years old.

She was born at Mercy Hospital. After she made it past the first 24-hours, they told me she had polycystic kidney disease. They said her kidneys grew quicker than she did, and that she had to catch up to them. That was not true.

When she was 3, I took her to see Dr. Demetrius Ellis at Children’s Hospital in pediatric nephrology.

He asked, “What’s wrong with your daughter?”

I told him she has polycystic kidney disease. He asked me what it was. He knew what it was, but he wanted to see what I knew about it.

“The doctors at Mercy said her kidneys grew faster than she did, and she needed to catch up to them,” I said.

He looked at me and said, “That could not be further from the truth; further than anything in this world.” He later told me, “Your baby is going to eventually need a kidney transplant.”

That’s when I found out what was actually wrong with my baby.

At that point, at 3 years old, she went on 16 pills a day. She took eight pills twice a day. She learned all her medicines, the dosages, and she could spell them. She was very smart!

We had already seen a bunch of doctors. They told us everything she couldn’t have. She wasn’t allowed to have pork, salt or anything that would contribute to high blood pressure. We had to revamp our whole life and our diet.

When she visited her friends’ and family’s houses, she knew what she could eat and what she couldn’t. I had an amazing support system because my whole family and all my friends got on board. When we would go to different family members’ houses for the holidays, they would say, “LaNae’s food is over here.”

Even though having a sick child was one of the biggest and hardest things of my life, I felt like Norm on “Cheers.” Every time I went to the doctor’s office, everybody knew me: the parking attendants, everybody. Even the cops said “Teaira!” That’s how much time we spent in the hospital.

We were always in the hospital. She was always sick.

Graduating with a new kidney

Dr. Ellis said when it got closer to her needing a kidney, he would make sure she never spent a day on dialysis, and he made sure of that.

“When it’s time for her to go get a kidney,” he said, “I will put her directly on the transplant list and we will get her a kidney.”

Before she turned 14, she was put on the list to receive a transplant. He did exactly as he said he would.

He said I would receive a call when a kidney was available. When I got the call, I was to take her to the hospital.

On May 30, 2008, we got the call. When that call came, we were so confused, discombobulated and scared. I remember it like it was yesterday.

When they called me and said they wanted me to bring her in because they had a kidney for her, I didn’t believe them.

It was like 10 o’clock at night, and I just happened to be on the phone with my aunt, who was LaNae’s favorite great-aunt. Every time I needed something for my daughter, whether it was at the hospital or at home, this aunt would drop everything. I was on the phone with her when the call came through, and I said, “Hold on.”

I clicked over and they told me who they were. But I didn’t believe them.

They hung up, and I clicked back over. My aunt asked me what was wrong.

“I think my baby’s getting a kidney transplant!” I said, “They told me that they had a kidney for my baby and for me to bring her to the hospital.”

Another call came in, so I clicked over. It was Dr. Ellis.

“I just got a phone call,” I said.

“Yes, it’s real,” he said. “Get my girl to the hospital. I’m there waiting for you. Pack her bag and bring her in.”

I clicked back over to my aunt and busted out in tears. I said, “It’s real. That was Dr. Ellis.”

I had to make arrangements for my other kids, and we went next door to my neighbor’s house. One of them is a reverend. They prayed for us, and then we went to the hospital.

LaNae had her first kidney transplant less than two weeks before her eighth-grade promotion.

Every day after her transplant, when she woke up, Dr. Ellis asked her how she felt. She would look at him and say, “I gotta go to school!” Her graduation was just nine days away. She kept telling him the same thing.

“We’ll see,” he said. “Right now, we have to get you better. You may miss graduation; that depends on you.”

Two days before graduation, he looked at me and he said, “We’ve all been talking. We’re going to let you take her to graduation and bring her back to the hospital.”

I said, “For real?”

He said, “Yes. Get my girl ready for graduation.”

So we had to get her ready!

My aunt, her great-aunt, but still her favorite, ran to the store and bought four or five dresses. She told LaNae, “You pick what you want, and I’ll take the rest back.”

My other aunt said, “I’ll come to the hospital and get her hair done.”

They brought shoes. She tried on all the dresses and picked out what she wanted.

Watching her get ready was just amazing. Just talking about it now brings back all the emotions.

The day before, they had said she could go to graduation, and a nurse would go with her. She was supposed to come back to the hospital afterward.

But that morning, Dr. Ellis said, “We’re discharging her. This is her graduation gift. Take my girl to graduation and come back and see us in a week. If you need me, call me. Now go have a great time.”

When we got to the school, all my family was there because they knew she was going, but they didn’t tell anyone she was going.

When they called her name, she walked in from the hallway and got a standing ovation.

A long, hard fight

Fast forward: She graduated from high school and went to Penn State, McKeesport. They were wonderful. Working with her doctor, they made sure she had her own dorm room and provided an air conditioner for it. They had security on board so any time she needed to go to the hospital, they would take her whenever she needed and I would meet them there.

In 2014, she ended up having to go on dialysis. Her body rejected the kidney. She couldn’t finish college and came back home after starting her third year.

She had to do hemodialysis for a while, but then she switched to peritoneal dialysis every night for nine hours while she slept.

Being in renal failure led to a constant spike in blood pressure. For this reason, UPMC removed her from the transplant list. Since she advocated for herself, the transplant team insisted — incorrectly — that she was depressed and recommended she see a psychiatrist.

We needed help, so I reached out to Ed Gainey. He was our state rep at the time. I called him and told him what was going on.

He started calling and writing letters and fighting to get her on the transplant list. But it wasn’t working.

Around that time, I met Barb Warwick because we were fighting the Mon-Oakland Connector [shuttle road through Schenley Park and Four Mile Run]. We were at an event, and Barb overheard me talking about LaNae.

Barb asked, “They’re refusing to give her a kidney?”

I told her that UPMC and Allegheny General Hospital had both refused for separate reasons.

She said, “They can’t do that.”

I told her Ed Gainey was fighting for the last couple of years trying to get my baby on the transplant list. She said, “Call me.”

I called her and told her everything that happened. She talked to LaNae, and then she said, “Do you mind if I help?”

Barb was a freelance writer and mom. She was just a neighborhood person who came to fight the Mon-Oakland Connector. We became good friends.

After she talked to LaNae, she got some lawyers involved. I don’t know everything she did, and I never asked. Finally, Allegheny General Hospital decided to put LaNae on the transplant list.

When they put her on the list, she was automatically number one. Her need was so great because of how severe her case was.

She was on the list for under six months before she got her second kidney. She had waited 10 years, but we finally got her one. It was thanks to God, and our village, Barb Warwick and Ed Gainey. He started the fight and Barb helped us through the finish line.

LaNae will celebrate three years with her second transplant on Feb. 9.

The donors

Both donors were 23 years old. The first donor was a woman named Desiree. She died in a car accident. The second donor died from a brain injury and was male.

Each time, LaNae got something from the donor. With the first one, she became lactose intolerant.

Each time she gets a new kidney, it’s harder than before because she also takes on the other person’s antibodies. The more antibodies she has, the harder it is to match her.

Dr. Ellis said LaNae’s first kidney would last roughly five years, and it did. It lasted 6.5 years. She had rejection scares all the time with that kidney, but not with this one.

An angel following her

There’s an angel following her. There has been an angel with her throughout her entire life. I believe my grandmother’s been following her since the day she was born.

The dialysis clinic in Oakland was amazing; Kristen, one of the nurses there, the doctors, Dr. Beth Piraino who is now retired, and her team of nurses. LaNae had the best people. God put all the right people in her path.

God’s been good to my baby from the day she was born. God’s been watching over her and just keeping her safe. From that first day, when she was attached to all of the tubes and them giving her 24 hours to live, until now.

Dr. Ellis used to always tell her, “I wish all my patients looked as good as you.” She didn’t look sick. Nobody realized how sick she truly was, that she was fighting one of the worst things you could ever fight.

Dr. Ellis would tell LaNae, “You’re amazing. You walk in here, you’re always smiling.” And she said, “Well, I got my mom, and my mom’s always smiling, so I smile.”

Teaira Collins is the founder of Lion Of Judah Enterprises, a nonprofit focused on supporting African Americans with Down Syndrome and their families. She lives in The Run.

LaNae Wallace reviewed this account for accuracy and consented to having it published. The Homepage is grateful for her assistance.