Lonnie: 17 Year Old's Lung Transplant

In October 2022, Lonnie was 16 years old and completely healthy. He had two impacted wisdom teeth so he had a routine surgery to have them removed. Within weeks he was taken to the ER declared septic while coughing up blood. Within 48 hours he was placed on a ventilator and moved into the ICU. It wasn't until a week later when he still wasn't improving they discovered he had a rare autoimmune disease impacting his blood vessels: ANCA+ vasculitis as his lungs were filling up with blood. It is one in a million that someone his age would have this autoimmune disease but we were thankful to have caught it as he was immediately started on the appropriate treatment.

It was soon discovered that his lungs weren't the only organ impacted. The vasculitis flare up had caused damage to his lungs, spleen, kidneys, liver, and pancreas. All organs healed with time but the damage done to his lungs was just too much.

In February 2023 he had a lung biopsy to discover why his lungs weren't getting better as he kept going into respiratory distress.

The lung biopsy was extremely risky and landed him back on a ventilator in the ICU. It did give answers but not ones we wanted to hear: inflammation and scar tissue. A few days later we were informed he needed a double lung transplant to continue living as his lung function was at 13% with no expectation of improvement. He ended up on a BiPap ventilator machine 24/7 needing 6-10 liters of oxygen until he received his double lung transplant in May 2023.

His first year after transplant was pretty par the course. Unfortunately, almost to the day of his 1 year anniversary, he went into acute rejection meaning his body was starting to reject his new lungs. He went through steroid treatment and acid reflux surgery in hopes of preventing future rejection.

Not even two months later, Lonnie got sick again. Initially, it wasn't too concerning as he gets sick frequently but something felt different about this time because he just wasn't getting better.

In December 2024, he underwent a bronchoscopy where it was determined even though we were told his autoimmune disease shouldn't flare up again... it had. He was immediately given infusions and treatment.

6 months later he still had a cough with mucus plugging, his team ordered a CT scan to find the vasculitis made its way into his transplanted lungs and airways.

In the midst of all of this, Lonnie being the trooper he is started an apprenticeship program to become an electrician. He is living on his own with his fiance (HE GOT ENGAGED!). We are so proud of him but unfortunately, he has to call out and is missing work regularly due to testing, appointments, and his health. Overall, Lonnie is just trying to live as most 19 year olds during this stage of life: starting a career and family.

ALL medical expenses have been covered for Lonnie through insurance. I have reactivated this GoFundMe to help him and his fiance manage every day living while we try to find out what is going on. NONE of this money will be going towards me.