Gym owner and certified fitness trainer Lana Lamkin was the last person anyone thought would get sick. But in just eight weeks, the 50-year-old went from being extremely active to needing a double lung transplant.

To her doctors’ surprise, the culprit wasn’t COVID-19, although she did experience respiratory symptoms and acytokine storm. Lamkin was diagnosed with a rare autoimmune disorder called dermatomyositis. According to her care team, her outcome could have been much worse if it weren’t for her pre-illness fitness level.

What Is Dermatomyositis?Dermatomyositisis a rare inflammatory disease that primarily affects the skin and muscles but may also affect other organs of the body. Research suggests that dermatomyositis is an autoimmune disorder in which the body attacks its own healthy cells.

What Is Dermatomyositis?

Dermatomyositisis a rare inflammatory disease that primarily affects the skin and muscles but may also affect other organs of the body. Research suggests that dermatomyositis is an autoimmune disorder in which the body attacks its own healthy cells.

Pandemic Prompts a Misdiagnosis

Lamkin’s initial symptoms—aches, fever, and breathing issues—began in the beginning of April 2020.

“What prompted me to see the doctor first is the swelling I had in early April. I was so swollen, I couldn’t even bend my legs past 90 degrees,” Lamkin says. “But with COVID just ramping up, my family doctor suggested we do a video visit, and he prescribedprednisone. The steroid took the swelling way down and also suppressed the autoimmune condition that I didn’t even know I had at the time.”

She started to feel better, but she knew that something was still not right. “I know I downplayed it to my doctor a bit,” she says. “I should have been more aggressive with telling him about my breathing issues and how bad my swelling was. I think that comes back to just being as physically fit as I was, and that I could keep going and drive through it.”

Benjamin Missick, MD, a physician with Blakeney Family Physicians in Charlotte, North Carolina, has been Lamkin’s family doctor since 2014. “I hardly saw Lana because she was in great health,” he tells Verywell. “She has a family history of autoimmune issues, so we assumed she was heading down that path. The prednisone did help at first and she seemed to feel better. But when she emailed saying she had shortness of breath, we knew something else was going on. Imaging of her lungs clearly showed inflammation, and of course, we thought it was COVID.”

Overnight Pulse Oximetry Test to Evaluate Oxygen Levels

“COVID was the leading diagnosis initially. But after she tested negative four or five times, doctors started looking for other answers.” Missick says. “We knew for sure we were dealing with some sort of autoimmune disorder, but we weren’t sure what.”

A Rare Autoimmune Condition

Missick says Lamkin did test positive forantinuclear antibodies(ANA). An ANA test is common when autoimmune disorders are suspected.

“I’ve seen very healthy people take a turn with autoimmune conditions,” Missick says. “But Lana’s good health definitely gave her a buffer and helped with her recovery. We stress to patients that good health can help protect you from whatever you may face.”

According to the Myositis Association,“myositis”refers to a disease involving chronic inflammation of the muscles. Marker PL-7 is an antibody present in a patient diagnosed with antisynthetase syndrome, a rare autoimmune disease associated with dermatomyositis.

The plan of action: Do whatever it takes to help her lungs heal.

New Lungs

Lamkin was intubated and put on anextracorporeal membrane oxygenation(ECMO) machine. This essentially pumps a patient’s blood outside of the body, allowing the heart and lungs to rest.

Her medical team hoped that if her lungs could heal, she could avoid a transplant. Lamkin underwent a number of procedures, but her oxygen levels andtidal volumedid not improve. Doctors determined she would likely need a double lung transplant.

She was airlifted to Duke University Hospital on May 12, where she immediately underwent two hours of surgeries to move the ECMO from her groin to her chest and to replace the intubation with a tracheostomy. She was stabilized and brought out of the induced coma, but her lungs were too diseased to recover. On May 20, she was listed for a double lung transplant.

“Three days later I suffered a severe setback and couldn’t move any part of my body,” Lamkin says. “[Doctors] did extensive testing for neurological damage. Just one day later, I was miraculously able to move all of my extremities.” Her doctors had no explanation.

While she had dropped from 121 pounds to 80 pounds, her prior good health and fitness convinced her medical team that she could not only survive the surgery, but once recovered, continue to live a full and relatively healthy life. Her new lungs arrived, and doctors successfully completed surgery on May 25.

Road to Recovery

June 24 was a particularly memorable day for the Lamkins. It’s the day Duke University Hospital lifted its COVID-19 visitation restrictions—and it’s also Lana and John’s wedding anniversary. With the exception of the 12 days in ICU, it was the first time they had been together since April 20.

Soon after surgery, Lamkin began physical therapy in the hospital. After her release on July 3, she began rehab.

She was discharged in just a few weeks. “They were surprised at my speedy recovery,” Lamkin says. “Several Duke medical staff expressed that my prior fitness was really what helped me get through this.”

Now, Lamkin is getting back to being her active self.

“I can do whatever I want to do at this point, as long as I go slow and make sure that my body is responding well,” she says. “My breathing still holds me back. I’m trying to make sure that I get deep breaths down into the lower part of my lungs. My body won’t allow me to do what I used to do yet. I’m hopeful that it will. And I’m hopeful that my lungs continue to heal and are able to take in the oxygen that I need to do those hard workouts.”

Lamkin points out that a quick recovery doesn’t mean her life is without significant challenges. She currently takes nearly 40 pills a day, including anti-rejection drugs for her donor lungs.

“I will always have this autoimmune disease and I will always have someone else’s lungs in my body,” she says. “Total recovery is not possible, but living a full life is possible. I really have no restrictions, just I have to accept what my body will allow me to do. I know that I can still be very fit. I may not be where I was before, but I have to be okay with that because I’m here and I’m alive.”

You can read more about Lana Lamkin on her blog,Living Well with Lana: Faith, Family, Food & Fitness.

1 SourceVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Organization for Rare Diseases.Dermatomyositis.

1 Source

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Organization for Rare Diseases.Dermatomyositis.

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

National Organization for Rare Diseases.Dermatomyositis.

Meet Our Medical Expert Board

Share Feedback

Was this page helpful?Thanks for your feedback!What is your feedback?OtherHelpfulReport an ErrorSubmit

Was this page helpful?

Thanks for your feedback!

What is your feedback?OtherHelpfulReport an ErrorSubmit

What is your feedback?