DIAGNOSED WITH CYSTIC FIBROSIS AT BIRTH, 25-YEAR-OLD CHRISTOPHER ARENDT RECEIVES A LUNG TRANSPLANT
by ELLEN ORR
What do you need to live your best life? Maslow asked it in the ’40s, and it’s a question we ask ourselves and each other regularly, especially during the holidays: “Do we need more eggnog?” “Do you need more time to shop for gifts?” “Do I need to program the DVR before we leave for vacation?”
For Christopher Arendt, “needs” are a bit simpler. At age 25, unable to breathe, he needed new lungs.
Diagnosed at birth with cystic fibrosis, Chris’ childhood was “pretty normal,” he said, despite the complications of living with a respiratory disorder, which had him in the hospital for, on average, six weeks out of every year of his life. At 18, his lung function began declining, but it wasn’t until age 24 when it took a significant toll on his life. “When I was 24, my lung function declined to about 25 percent,” he said. “I kept working [as an auto mechanic] because I had to have insurance for all of the medication and such that goes with CF. But when I turned 25, I was admitted to the hospital, and they told me my lung function was down to 17 percent.” The doctor administered antibiotics for three weeks, a procedure known in the CF world as a “tune-up.” “Your lung function usually spikes back up a bit, at least enough to be able to breathe,” Chris explained, “but mine didn’t come back up. They told me I needed a lung transplant.”
Chris’ employer-provided health insurance had run out, and besides that, without the ability to breathe, he would have to quit work anyway. Without insurance, he would not be able to procure a lung transplant. “The doctor told me I was either going to have to get some kind of insurance to have a lung transplant or get ready for comfort care,” he said. “I wasn’t ready for comfort care.”
Desperate, in December of 2017, Chris and his wife, Kimberly, packed up their home in New Boston to move in with Chris’ mother in North Carolina. Because of his preexisting condition, he was eligible to be added to her insurance plan as long as he lived under her roof.
In January of 2018, pre-transplant testing began. On February 4, Chris’ 26th birthday, he underwent intestinal surgery for Distal Intestinal Obstruction Syndrome, a common CF morbidity. A month later, he received a feeding tube; he weighed only 109 pounds (“I looked like an umbrella,” he laughed) and needed to gain at least 20 pounds in order to be put on the lung transplant list.
On July 12, 2018, he was listed.
While it used to be that organs were distributed on a first-come, first-serve basis, the United States now uses a lung allocation score (LAS) to determine recipient priority. The scoring system, which takes into account various measures of the recipient’s health, is supposed to predict the probability of a patient’s survival during the wait time, as well as the projected lifespan post-transplant. The scale is from zero (poor) to 100 (good). Chris’ score was 42.
Less than a week later, at 11:30 p.m. on July 16, they received the call: Chris needed to be at the Duke University Hospital by midnight to begin the transplant process. They sped the 44 miles to the hospital.
Upon arrival, Chris underwent surgery prep, but he knew it might be for naught. “They get you ready for the transplant whether you’re going to get [the organ] or not,” he said. “They might tell you the lungs have gone bad. Usually people go through two or three dry runs before you actually get a transplant.”
Prep ended at 2 a.m. They told him to go to sleep—an impossible task for someone who may or may not be awaiting major surgery. Chris was wide awake when, at 6 a.m., the nurse came in to tell him the news: “She said, ‘The lungs are good, so we’re going to wheel you back now,’” Chris recalled. “I was mind-blown.”
Twelve hours later, he awoke. His original lungs were gone. In their place lived the ultimate regift: a set of lungs which were now keeping alive their second host human.
His recovery was remarkable. Upon walking a mile’s worth of laps around the ICU immediately post- surgery, “everyone was calling me Superman,” Chris laughed. By the fifth day post-op, he was walking over five miles at a time.
Chris was discharged on Day 15 and started physical therapy immediately. Eighteen days later, he was released from PT.
But it hasn’t all been smooth-sailing from there. Cystic fibrosis has no cure—not even new lungs. In October, his first day back in Texarkana, he collapsed and experienced delusions, and was immediately airlifted back to Duke. From his CF-related diabetes, his blood sugar had risen to over 1,700. (“Most people go into a coma at about 800,” Chris explained.) He also showed signs of rejection, but a round of intense steroids seem to have taken care of that. He will be tested for rejection again in January.
Now, however, Chris is doing okay. He and wife, Kimberly, are living back in New Boston, where the high school sweethearts met. “[This whole process has] definitely made me more appreciative of the simple things, like being home,” Chris said. “It’s really awesome to be home.”
Before long, he will be on the job hunt yet again, though his days working as an auto mechanic are likely over due to the danger the fumes would pose for his “new, polished-up lungs.” He is considering a career in car sales, since he already knows the product, literally inside and out. In the meantime, Chris and Kimberly are thankful for their friends and family who have contributed to his GoFundMe page.
For now, he’s enjoying his lungs, the ultimate gift, received from a 30-year-old construction worker named Kyle. According to the accompanying letter, Kyle was a lot like Chris. “His family wrote that he liked the outdoors and loved animals,” Chris said. “He seemed to be a really good person. I’m going to write another letter to his family, but it’s hard to know what to say. Their son passed so that I could have life, and that’s crazy.”