Lonnie’s mother, Stephanie Pesterfield of Colorado Springs, still finds it difficult to talk about her son Lonnie’s near-death experience. Yet as published recently in People, Stephanie and her son want to encourage others who must make decisions that impact a loved one’s life. They encourage everyone to go with their gut and not shy away from that responsibility. She wants to motivate other parents to speak up and advocate for their children and loved ones.

Stephanie said that each time she felt uneasy about choosing a new path, it turned out to be for good reason. On the other hand, it is important to trust your medical provider.

A Routine Extraction

How did it start? It was a simple extraction of impacted wisdom teeth, a common procedure for many people.

At first, because Lonnie had been so ill, he did not want to participate in his mother’s online message. But when she explained that she wanted others to be aware that the autoimmune disease had been misdiagnosed as pneumonia, Lonnie asked to be included saying that he hopes the doctors can save more lives by identifying vasculitis and not misdiagnosing it as pneumonia.

Stephanie has five other children, four of whom are disabled. She often said that Lonnie, the second oldest child, is the healthiest in the family. He loved weightlifting and hoped to become a firefighter. Lonnie was 16 when Stephanie brought him to the dentist to have his impacted teeth extracted. After proper evaluation, the oral surgeon routinely removed all four teeth.

Ten days later, Stephanie was slightly alarmed when Lonnie suddenly complained of being in pain. Stephanie had him examined by the oral surgeon then within a few days Lonnie began to cough up blood. His condition continued to worsen.

The diagnosis went from being related to dental extractions to pneumonia. He was put on a ventilator. The doctors admitted they were not certain about his condition, but all evidence seemed to point to a severe case of pneumonia.

The medical team administered five different medications, but nothing seemed to prevent his condition from worsening. Then one of the pulmonologists with about forty years of experience said he suspected it might be a ‘weird’ autoimmune disease. He gave Lonnie 20-30 other tests just to eliminate other possibilities and confirm his suspicion.

It was then that the family was told Lonnie had a rare condition called granulomatosis with polyangiitis (GPA) vasculitis. It is a rare disease and leads to inflammation of the lungs, throat, kidneys, and sinuses.

Lonnie’s doctors were reassuring saying that they were giving him the gold-standard treatment. However, Stephanie and her husband were warned that there may be some damage to his lungs.

When Lonnie was finally released from the hospital, he was also left in the care of various professionals who monitored the damage to his liver, kidneys, pancreas, and spleen.

He had a slight uptick in his condition in December but by February everything fell apart. His lungs were functioning at 14% and he needed a lung transplant.

Stephanie spent her days traveling between the Denver hospital and their home in Colorado Springs. She rotated ‘shifts’ with her husband while managing critical day-to-day decisions.

As Stephanie pointed out, there is no ‘How To’. She relied on information from Lonnie’s medical team and reinforcement from family and friends to cope with complex decisions.

The Waiting List for Lung Transplants

Lonnie’s name was added to the transplant list in May. By that time, he was in the Colorado University hospital due to his weakened condition. Stephanie found the thought of a transplant to be very stressful, but Lonnie looked at it as having his life back again.

It was major surgery that came with so many risks and complications. Stephanie gathered her strength and acknowledged that this meant life or death for her son.

Lonnie is taking a significant amount of medication which is required but also weakens his immune system. He is pleased that he does not have to rely on a wheelchair or walker.

In summation, Stephanie recalls that Lonnie was always helpful to others even when he was facing an uncertain future. Now he wants to live life to the fullest and make every moment count.

Stephanie agrees that they are all very fortunate that Lonnie had such a short wait for a donor. She understands that so many people have died waiting for a proper match.

She also realizes that it is a difficult position for parents to be in having to make such a decision surrounded by so many caveats. Lonnie and his family hope that more people will consider the life-saving power of organ donation.