Post Falls woman comes home a transplant survivor
Courtesy photo Alex Heisel gives a thumbs up just minutes after the ventilator was removed and she breathed her first breath with her new lungs after a 12-hour surgery Oct. 30 in Stanford University Medical Center.
It's an emotional moment for Alex Heisel, 26, of Post Falls, left, and dad, Jim, as Alex breathes her first outside air in November upon discharge from the Stanford University Medical Center following her lung transplant surgery. Alex is now home and will be taking it easy for a few months, although she is ahead of her predicted recovery time. (Courtesy photo)
LOREN BENOIT/PressAccompanied by her best friend, Katy Rhodes, left, Alex Heisel, 26, shares her journey from an ailing cystic fibrosis patient to a recovering transplant survivor. Heisel is back home two months ahead of schedule and is doing better than expected.
Jim Heisel speaks about the moment he and her daughter shared when Alex first experienced fresh air with her new lungs. (LOREN BENOIT/Press)
LOREN BENOIT/Press Alex Heisel, 26, of Post Falls shares her journey from an ailing cystic fibrosis patient to a recovering transplant survivor. After receiving two donated lungs in a 12-hour surgery Oct. 30 at Stanford Medical Center, Heisel is back home two months ahead of schedule and is doing better than expected. Sitting with her is her best friend, Katy Rhodes.
POST FALLS — Saying goodbye to her family for what could have been the final time was one of the hardest things Alex Heisel ever had to do.
"I gave my brother and sister and my mom and dad a hug," the 26-year-old said Thursday afternoon. "I was so scared."
Right before surgery, while she was still conscious, she asked for a prayer and to hear her parents' voices one more time.
"We all prayed," Heisel said. "The nurse said the prayer and then I said a little prayer, and then I was like, 'Can I call my parents again?' and I called them and I said, 'I love you.'
"That’s the last thing I remember. I don’t even remember hanging up the phone."
While her sleepless parents paced the Stanford University hospital in California and her loved ones in North Idaho kept vigil through the night, Heisel's surgeons carefully worked to remove lungs from a donor and place them in her chest.
She was excited, but then extremely worried, when she received the call Oct. 29 while out to breakfast that a donor match had been made. The doctor who called told her she had 20 minutes to decide. Then she had just six hours to get from North Idaho to Stanford.
"I got back to my house from breakfast and I completely shut down,” she said, her voice choking with emotion as she recalled that moment. “I felt like I was going to die.”
As someone who suffered from cystic fibrosis all of her life, Heisel's respiratory health was a constant concern. Her mobility was limited because of low oxygen levels. She coughed all the time; her lungs would get blocked and she would have to spend countless weeks in the hospital and adhere to a strict treatment regimen to maintain what energy she could muster. Strenuous exercise was not an option for her. She was finally placed on the transplant waiting list when she developed a hole in her lung in 2015.
"Every day is different every time I wake up," she had said in a July 28, 2017 Press article. "I have the lungs of an 85-year-old."
It was a whirlwind from the time she got the phone call until she was on the operating table.
“I didn’t have any thoughts in my brain but worry. I didn’t have any excitement because I was just so scared," she said Thursday, adding that she didn't see her parents until they met on the Angel Flight to Palo Alto.
“I was like, ‘Am I ever going to see my parents again?’" she said. "We got on the plane and I didn’t say one word."
During Heisel's surgery, her parents were updated about every four hours. She was placed on a heart and lung machine to keep her heart from overworking.
"There was a little issue when they hooked her up to that. It tore the inside of her aorta," said her dad, Jim Heisel. "They stopped, and this is what took so long. They decided whether or not they were going to continue."
One bit of reassurance Jim and mom Trina received during the long night was during a call from a nurse, who told them Alex's surgeon was a proficient doctor who actually wrote a medical book about lung transplantation that is used by health professionals around the world.
“It was epic just to have that piece," Jim said.
After 12 hours, Alex was in recovery, and once again opened her eyes.
“I was so happy to be alive,” she said. “I was like, ‘Yes, I woke up.’ I woke up."
Within a few hours, the doctors removed the ventilator, and she experienced her first independent breaths with her new lungs.
"They were like, 'OK you need to start breathing,’” Alex said, taking a deep breath. "It was like a giant sneeze, and you feel so refreshed and satisfied after that sneeze. I just started crying and gave the thumbs up because I couldn’t talk."
Alex's recovery was much faster than predicted. She was in the intensive care unit only a few days, and although doctors expected her to be in recovery until March, she returned home in the wee hours of Tuesday morning this week.
"They were so amazed how fast I was recovering,” Alex said. “They said, ‘These lungs love you.’”
Alex said she overheard in the hospital that her donor was a young female, age 12 to 18. She and her family do not take it lightly that another family is grieving the loss of their daughter while Alex lives a healthier life.
"The only way I’m alive is because of that person,” Alex said.
She has the option to write the family a non-self-identifying letter in about six months to thank them for their decision to contribute these healthy lungs to someone in need.
"I would tell them about my struggle up until that point, and how much their daughter has changed my entire life,” Alex said. "I will keep mine and her lungs happy."
The process has been mentally and emotionally trying for Alex. She said she experienced a sadness knowing her own lungs would no longer be with her.
"They were my lungs,” she said. “I’ve had them my whole life and now I have to throw them away. It was like a loss of family. They seriously powered through everything for me ... I felt like, ‘I’m sorry I’m doing that to you.’"
She also has a lot of anxiety about getting sick. She will be wearing a surgical mask with a filter for the next several months when she goes out in public. That adds a level of stress; she had the words "new lungs" embroidered on the mask to inform those who look at her oddly.
"It’s weird,” she said. “Everyone is staring at me and being like, 'What is wrong with her? Does she have a disease?' Little kids are like, ‘Mom, why is she wearing a mask?’ Hiding my face is just super weird for me."
Alex will be traveling to Stanford once a month, as well as frequently having her blood drawn by local doctors.
She was happy to say she has thrown away her inhaler and she's been biking six miles a day. Even though she has more oral medications to take each day — 30 more on top of the 60 she was already taking — she'll gladly take that over her old routine.
Going from 21 percent oxygen intake to 86 percent has given her energy she’d never experienced, and she's already setting big goals.
“This is small, but I want to run Bloomsday," she said with a smile. "Or walk."
As of three weeks ago, Alex's lung transplant expenses were at $2 million. She turned 26 in the middle of the process and was taken off her parents' insurance. She won't be working for six months, so her friends and family members are throwing her a fundraiser.
Alex Heisel's Breathe Freely Dinner/Silent Auction will be at 6:30 p.m. Friday, Feb. 16 in the Coeur d'Alene Eagles Ballroom, 209 Sherman Ave. Tickets are $25 and can be purchased by emailing poreilly@21goldchoice.com or calling 208-755-6638.