When she was 25, Brittani Bury spoke with the Daily Journal about her lifelong journey of being born with five congenital heart defects and two congenital lung defects. She had her first open-heart surgery at less than a day old at Lurie Children’s Hospital in Chicago.
Now at 30, Bury is currently awaiting what will be the very first heart and bilateral-lung transplant conducted at Northwestern by a collaborative team of doctors from Northwestern Memorial Hospital and the Ann & Robert H. Lurie Children’s Hospital of Chicago.
In July of last year, Bury had a week-long hospital stay where she went through around 25 appointments to complete a head-to-toe examination to ensure her body is healthy enough to support her after the transplant. In September, it was made official that she was on the transplant list.
She is one of 43 people in the U.S. that is currently waiting for a heart and both lungs.
It’s been over a decade since the last transplant of this kind was done in Illinois, and it was completed at Loyola University Medical Center. On Bury’s team is surgeon Dr. Ankit Bharat, who completed the first bilateral-lung transplant on a COVID patient.
“I’ve never worked with him before this, but I’m impressed,” Bury said. “I definitely feel like I’m where I’m supposed to be and with the people I’m supposed to be with on this.”
While always knowing that it would be likely that she’d need this transplant, the conversation officially began two years ago with her team of doctors. Originally, she was planning on going to Cleveland Clinic but, due to out-of-state insurance issues, this did not happen. Cleveland is one of less than 10 hospitals in the United States that performs this transplant.
“This is a pretty big deal that Northwestern and Children’s have actually made the first heart-lung team,” said Bury.
A day in the life
Bury — who lives with her mother, Tammy, and her dog, Scruffy — is at a higher risk than most for catching outside illnesses, making the last year challenging.
“Basically, I’ve been home unless I need to go to the hospital to see my doctors or for testing,” said Bury. “Since March 2020, I think I’ve left the house for reasons not hospital-related maybe five times.”
Due to the progression of her illness, she spends most of her day in bed. She’s taken up knitting and watching documentaries to help keep her busy. Each day, she does breathing treatments and wears an airway clearance vest twice per day that helps break up the mucus in her lungs since her body is no longer able to do so.
When it comes to keeping herself positive, it all depends on her energy level for the day. While she doesn’t have a “one-liner” mantra that she looks to, she shared that music helps keep her feeling positive.
“If I’m having a bad day, I will try to push myself a little to cook because I love cooking,” Bury said. “That’s getting harder to do these days, but something like that usually helps me to take my mind off of things and enjoy that.”
An online community called the Zipper Sisters is also an important part of her day, as it’s a group of people dealing with similar issues. Since discovering the community in 2013, Bury said that it’s grown from 1,000 to 4,000 members — some of which she was able to meet at an Adult Congenital Heart Association conference in 2014.
Preparing for transplant
While still awaiting the life-changing call that will come when organs become available, Bury — who has had four open-heart surgeries and about 20 other additional surgeries — is preparing herself for the transplant.
The recovery process will be a minimum of three months which will require 24/7 care from her mother, who will have to take that time off of work to be with Bury. During that time, they will be without a paycheck and a GoFundMe has been set up to help make up for that.
“We don’t know exactly, but we figured, once I’m discharged, that we’ll have to stay in Chicago for a month after that and hopefully we get a room at the Ronald McDonald House,” she said. “We’ve been staying there since 1990 so they know me and they know the situation.”
She is also preparing by writing an open letter to the family of the donor to help with the process. While it is of course unclear who the donor will be, it’s something that has been on her mind. She expressed that she thinks of her future donor often — something that has increased since being listed.
“[I’m] hoping that they’re enjoying life and things like that,” she said. “With this situation, you want to get the call, obviously, but a person has to die for that to happen. So, I knew that I would have to start the letter before I got the transplant. I knew that if I waited until after, things might be too emotional.”
The wait for a transplant is often a long one, and this is extended for Bury due to her rare blood type. However, she continues to look ahead and shares that she is looking forward to helping educate her community with this experience.
“My whole life, doctors have been learning from me,” Bury said. “And this is probably the biggest lesson that I will teach people because [these transplants] will continue after me and I’m kind of honored to do that for the CHD community.”
For more information on Bury’s story, visit her GoFundMe at gofund.me/b3a492d2.