Teen Overcomes Lung Transplant to See Her Favorite Band

If it weren’t for her favourite band, BTS, a South Korean hip-hop band, Jennifer Alvarado just isn’t certain she may have endured the lengthy await a lung transplant.

“After I first acquired recognized, it was very laborious to discover a supply of happiness, particularly when a previous physician mentioned I may die. BTS’s music was like remedy. It was an enormous supply of happiness and pleasure for me once I actually wanted it,” she says.

When Jennifer was 15 years outdated, her pulmonary hypertension (hypertension within the lungs) worsened. It was robbing her of not simply her breath, however her life. She couldn’t do the issues she loved, and she or he consistently felt worn out.

Her household sought care close to their dwelling in Indio, California, the place docs mentioned the one resolution was a lung transplant. She was referred to Stanford Medication Youngsters’s Well being, which has the one Pediatric Lung and Heart-Lung Transplant Program on the West Coast. 

There, she would start her greater than two-year journey to get a brand new pair of lungs. And one band, one tune, acquired her by, alongside together with her household’s fixed love and assist.

“The BTS tune referred to as ‘Dis-ease’ actually stood out throughout the wait. It says, ‘I’m sick and drained however don’t wish to mess up as a result of life goes on.’ These phrases stored me shifting ahead by the oxygen and the ache,” Jennifer says.

Receiving a lung transplant analysis and care at Stanford Youngsters’s

Jennifer got here to Stanford Youngsters’s in July 2022 for a lung transplant analysis, and she or he was placed on the nationwide lung transplant ready listing in October 2022.

“Jennifer’s pulmonary hypertension was advanced, so we introduced a big group of consultants collectively to supply her with the excessive stage of care that she wanted,” says Cissy Xin Si, MD, medical director of the Pediatric Lung and Coronary heart-Lung Transplant Program.  

Whereas on the ready listing, Jennifer obtained care from the multidisciplinary lung transplant care team and their specialty colleagues, similar to cardiologists who specialise in pulmonary hypertension. Her care group did all the pieces they might to enhance her well being, together with adjusting her medicines, supporting her respiration, supporting her psychological well being by way of a transplant psychologist, and optimizing her health with bodily remedy. Jennifer and her mother, Patty, and brother, Anthony, lived close by on the Ronald McDonald House at Stanford.

“Jennifer and her mother developed an amazing bond with our lung transplant group and shared a excessive stage of belief with us. They’ve been nice companions,” says David Cornfield, MD, chief of the Pulmonary, Asthma, and Sleep Medicine Center.

Within the hospital, Jennifer would maintain dance events to BTS together with her household and care group members. “I may nonetheless dance to their choreography with my oxygen tank despite the fact that I might get winded,” she says. “I attempted my greatest at all times to show away from the negativity, and BTS was an enormous a part of that for me.” 

Getting too effectively for the transplant listing

Earlier than transplant, kids take part in prehab to maintain them as robust as potential regardless of their superior illness. The care group was impressed how Jennifer stepped up and did no matter they requested of her to enhance her well being.  

“Jennifer was so decided and dedicated to assist herself really feel higher, and to be an energetic participant in her care,” says Rachel Hopper, MD, director of the Pulmonary Vascular Disease Program. “We mentioned strolling extra would assist, and she or he started strolling a number of miles a day.”

With Jennifer’s involvement, the group’s care plan to optimize her well being labored. She improved a lot that she not wanted to be on the lung transplant ready listing. She nonetheless wanted oxygen and drugs, however her group felt she was not sick sufficient to wish an instantaneous transplant.

“With lung transplant, timing is vital. Deceased donor lungs don’t final ceaselessly in a recipient, so we’re at all times contemplating the timing of the transplant to get probably the most profit,” Dr. Si says.

“One of many hardest selections we should make is deciding when to transplant. Our total multidisciplinary group was very considerate about her case,” provides Dr. Hopper.

As a result of Jennifer had improved sufficient to not want an instantaneous lung transplant, she was in a position to go dwelling to Indio, a 10-hour drive away, the place she may resume her life relatively than be within the limbo of dwelling close to Stanford Youngsters’s.

“We knew it will be laborious information for Jennifer to listen to, given the nice deal of emotion which inevitably is intertwined with being on the transplant ready listing,” says Laura Green, RN, her nurse coordinator and supervisor of the Pediatric Lung and Coronary heart-Lung Transplant Program.

It was a complicated time for Jennifer, however she stored her spirits up with the assistance of her household, her trusted suppliers, and the music of BTS. “Being within the hospital was a darkish time for Jennifer, however when she listened to BTS, it was stunning the way it helped her get out of the stress and let her neglect all the pieces. When a smile would pour out of her, it was a treasure to us,” says Anthony, Jennifer’s brother.

Dr. Cornfield shared the information with Jennifer and her household, who understood that in the long term it was the proper resolution for her and her life’s trajectory.

“Her mother was grateful for our forthrightness,” Dr. Cornfield says. “When Jennifer’s situation worsened once more a yr later, they didn’t hesitate to return again to us, despite the fact that she was 18 and will have chosen an grownup transplant program near dwelling. That belief meant loads to us.”

Receiving a lung transplant at Stanford Youngsters’s over a yr later

In July 2024, Jennifer’s pulmonary hypertension and lung illness had progressed, and she or he was put again on the lung transplant ready listing. With extreme, superior pulmonary hypertension, lung transplants are the final resort for survival. A number of months later, she acquired the decision that her Stanford Youngsters’s care group had situated donor lungs. Her transplant was scheduled on Halloween.

“Earlier than surgical procedure, I felt very nervous and scared about whether or not I might make it out alive,” Jennifer says.

The surgical procedure went precisely as deliberate. Jennifer’s transplant surgeon eliminated her diseased lungs and changed them with wholesome donor lungs. In the course of the operation, the surgeon related Jennifer’s airway, pulmonary arteries, and pulmonary veins to make sure good blood circulate to her new lungs. She spent two weeks recovering within the hospital.

Jennifer stored up her cheer, no less than on the surface, regardless of having challenges after transplant, like needing to have her airway dilated to assist enhance her respiration, a reasonably widespread complication after lung transplant. She obtained care from the Interventional Pulmonology Program at Stanford Well being Care and from the famend Aerodigestive and Airway Reconstruction Center at Stanford Youngsters’s.

“Whereas we’ve got a exceptional airway group able to performing each advanced and routine procedures, what really defines our middle is our capability to coordinate and talk successfully. That team-based method is what ensures probably the most comfy care and the absolute best outcomes for every baby,” says Douglas Sidell, MD, otolaryngologist with Stanford Youngsters’s, who carried out certainly one of Jennifer’s minimally invasive airway procedures.

When she left Stanford Youngsters’s in late 2024, it was the primary time she hadn’t been hooked as much as oxygen in years, and she or he was respiration simply.

“It felt bizarre strolling out of the hospital with out having to tug my oxygen tank,” Jennifer says. “I used to be free!”

Jennifer additionally developed a sort of most cancers referred to as posttransplant lymphoproliferative dysfunction (PTLD). The Stanford Youngsters’s Interventional Radiology group partnered with their grownup colleagues at Stanford Health Care to rearrange for Jennifer to obtain a diagnostic robotic transbronchial cryobiopsy, which confirmed the analysis. She obtained remedy and is cancer-free immediately.

Dr. Si has common follow-up appointments with Jennifer. “She is probably the most motivated affected person I’ve ever seen posttransplant. She is aware of her medicine routine arms down, and she or he at all times comes ready and able to take notes.”

“Jennifer is likely one of the bravest sufferers we’ve got had. Regardless of her preliminary concern and nervousness in regards to the transplant, she simply stored going and she or he has actually blossomed,” Inexperienced says.

The household says they’re “past grateful” to Stanford Youngsters’s for the care they obtained.

A posttransplant shock: Attending to see BTS play at Stanford

To maintain her going throughout her lengthy care journey, Jennifer dreamed of sometime seeing BTS in live performance and assembly the band. In the identical remedy room the place Jennifer cried when she heard the tough information that she must await transplant, she obtained unbelievable information.

“I shared together with her that our group was in a position to get three tickets to the BTS present on Stanford’s campus on Might 16, 2026. She was so completely happy that she began crying, saying, ‘This time these are tears of pleasure,’” Dr. Si says.  

The BTS live performance might be Jennifer’s first. She plans to take her mother and brother, her two largest supporters throughout remedy.

“It’s a dream come true,” says Jennifer. “I hope I can meet the band so I can thank them for his or her music and the way they helped me survive. Despite the fact that folks say they’re only a band, for me they’re a lot extra.”

Learn more about lung and heart-lung transplant at Stanford Children’s >