When singer-songwriter Chloe Temtchine was 25, she started having aches and pains, shortness of breath and flu-like symptoms. She went from doctor to doctor for five years but no one had answers. As time went on, her symptoms worsened and she gained about 15 pounds of water weight.

In 2013, she was diagnosed with pulmonary hypertension and  pulmonary veno-occlusive disease, which causes veins in the lungs to become narrowed or blocked, raising pulmonary pressure.

PVOD complicated her situation because PH medications dilate pulmonary arteries, so she could take only low doses of PAH medication.

By the time the doctors understood what was happening, her condition was so severe that she was given days to live.

In that moment, I decided that instead of believing I was going to die, I would believe that I would live.

Focus on wellness

To manage her symptoms, she convinced herself that she could heal. She read books and watched documentaries about people who defied the odds and overcame their illnesses in hope that she could do the same.

Reclaiming a sense of control gave her strength when everything felt unpredictable. At her worst, she could barely walk from the couch to the bathroom. So she started working on her health by slowly increasing her distance until she could jog for one minute. She adhered to a plant-based diet,  joking that she ate kale for seven straight years.

Creative expression kept her spirit in the right place. Music allowed her to disappear into a world where PH didn’t exist. Spending quality time with family and friends helped her focus on the future and possibilities.

It took a long time, but I eventually started to get better.

Journey to new lungs

Temtchine says her doctors initially were shocked at the improvement in her symptoms because of her limited treatment options.

She felt encouraged by her progress and wanted to share her journey online. She hoped that it could help someone else. As her symptoms improved, she started performing again, using an oxygen tank she named Steve Martin. But because her pulmonary pressure had decreased and she felt better, she started deviating from her strict daily routine.

One day, Temtchine was running on the treadmill and her heart rate spiked to 180 beats per minute. She was rushed to the emergency room, where she went into cardiac arrest and was placed in a medically induced coma for four days.

While on life support for 21 days, it became clear that I wouldn’t survive without a lung transplant.

Although her doctors had recommended lung transplantation years earlier, Temtchine says she held on to her lungs for as long as possible. She feared what post-transplant life would look like.

 She says she was more scared of transplant than dying. She had heard only negative transplant stories and statistics.

“When I realized I was out of options, I went from being petrified to begging for new lungs,” Temtchine says. “On Aug. 5, 2020, lungs came in and saved my life.”

After surgery, Temtchine found breathing difficult. She thought her surgeon, Abbas Ardehali at UCLA Health, removed her lungs and forgot to replace them. He explained that her nerves weren’t fully connected to her new lungs, so Temtchine needed to force herself to breathe for a short time instead of her body doing it automatically.

“If I had known that before the surgery, I think my experience would have been a bit easier,” Temtchine says. “That’s one of the reasons I think it’s important for transplant recipients to share their stories.”

Since the surgery, Temtchine has blood tests every six weeks to monitor immunosuppressant levels and pulmonary function tests every three months to ensure her lungs are functioning properly.

“I’m beyond grateful to be alive and to be able to breathe,” she says. “It’s an unbelievable feeling to wake up every day and feel well. I’m not sure I ever would have understood how lucky I was had I not gone through this.”

Performing with PH

Before Temtchine’s PH diagnosis, she learned that she had a paralyzed left vocal cord, which made singing even harder.

“Sometimes, I would be so out of breath I couldn’t sing,” she says.

Before each performance, her team played a two-minute, 20-second video to give her enough time to catch her breath so she could start singing.

Those kinds of experiences led her to develop the motto, “Do what you can with what you have.”

Music with a mission

Temtchine met the recording artist Freeway a few years ago on the OneLegacy Donate Life float at the Rose Parade. They sat next to each other, chatted the entire time and agreed to collaborate on a song.

When she started writing “Heaven in the Darkest Place,” it made her think of Freeway because of his kidney transplant experience and the loss of his two children.

The song is about empowering people going through dark times and reminds them they can always find a glimmer of light.

Temtchine says it’s important for her to honor those who no longer are with us.

“I’m on a mission to use my music and story to bring hope to those in need,” she says. She also uses her voice to spread PH awareness and promote the importance of organ donation.

In 2019, she created the Smile Tour, where she  visited kids in hospitals throughout the United States to reignite their sense of hope.

Before the tour began, she established the Chloe Temtchine Foundation in honor of Humayra Bodhania, an 8-year-old girl who died in 2017 from PAH. “Her passing has had a massive impact on me,” Temtchine says.

Temtchine says she’s looking forward to bringing the tour to life again in 2026 and making it even bigger.

I am a firm believer in God, and my faith has always guided me. Because my circumstances were so severe, yet I was able to get better, I believe the same is possible for anyone with a PH diagnosis.