Magnolia Long's story of receiving a new beginning

Magnolia Long goes to work as the Community Development Director (CDD) for the Town of Rutherfordton each day excited to make Rutherfordton an amazing place to live, work and play.

Her primary projects include Ruff'ton Roots Community Garden, the Redevelopment Commission and housing work, and planning community events, like the Town-Wide Easter Egg Hunt, Movies in the Park and Hilltop Fall Festival.

Magnolia loves her job and is working on a Master's Degree in Public Administration at UNC-Chapel Hill to learn how to better serve the amazing community of Rutherfordton and Rutherford County.

She's a busy woman and is working to make a difference in the lives of those around her.

But life for Magnolia hasn't always been as positive. Physically, Magnolia has had a tough road. She is among two percent of people in the country with her disease and dealing with its aftermath.

Just over five years ago on February 27, 2018 Magnolia was on her way to the hospital for what she described as transplant day at UNC Hospitals.

At that time Magnolia was scheduled for a procedure that would be risky, but she was willing to take the risk just to feel better. Her life was edging away from her.

"There are a lot of risks and benefits that go along with the procedure, but I have so much faith in my own preparation, my doctors, and everything else. I know that this procedure is going to go really well. I know that I'm being watched over, and the surgeon's hands will be guided," she wrote on the fifth anniversary of her surgery that took 14.5 hours.

She said mentally she was in a good place, ready to get her defective organs out of her body and recover.

"Physically, I can confidently say that I've done everything I can to get ready," she said.

After numerous doctors' visits Magnolia was prepared for a pancreatectomy with autologous islet cell transplant that occurred February 27, 2018.

"And it was nothing short of a miracle. As they were putting me under anesthesia, I felt an overwhelming sense of calm. I remember surrendering all control, and telling God that it was in his hands," she said.

"They took my pancreas, gallbladder, spleen, and duodenum, dissolved what was left of my black and dying pancreas into islet cells, and transplanted them into my liver. My liver accepted them, and I remained insulin-independent for four years," she explained.

Magnolia said when she woke up in the Intensive Care Unit after the surgery, although still intubated and after being cut from her sternum to below her belly button, she didn't feel the pain any longer she'd known so well for so long.

"I felt amazing, like a new person. I spent six days in the ICU, and three days on a floor. I went home on post-op day nine," she said.

The other remarkable thing is Magnolia was taking college courses and made the dean's list during the whole process.

The transplant truly did "undeniably miraculous things for me," she said. "It brought me pain relief, an appetite, hope, a chance to live my life like I always dreamt of doing. It gave me the ability to live my life like I am right now. It brought me the ability to take every opportunity that has come my way."

The story of her long term health issues

Magnolia was diagnosed with Cystic Fibrosis (CF) when she was six months old. She is one of 30,000 people living with CF in the US and upon her diagnosis doctors predicted she would live until age 34 at the most.

"From the very beginning, I was destined to be sick and live most of my life in the hospital," she said.

She was eight years old when she began having terrific stomach pains and the doctors believed it was the CF. She was a senior in high school when her health took an even greater downward turn. Her stomach pain was unbearable and she could hardly eat and suffered from being nauseous all the time.

Again the doctors believed it was the CF and were ordering psych consults to figure out why she was "faking" the symptoms.

"As discouraging as this was, I just kept going," she said.

Just months after high school graduation from Brevard High School, her mother found Magnolia passed out on the couch one day when she came home from work. Magnolia had ice packs all over her stomach and back.

After an MRI, Magnolia was found to have a complication CF, "pancreatic cystitis" which meant she had large macro cysts all over her pancreas. They were pushing into her liver, displacing her kidneys and sitting behind her stomach. Only seven percent of CF patients worldwide develop the condition and only two percent are symptomatic, she learned.

"There were no known treatments for the condition, except a total pancreatectomy in severe cases," Magnolia said. " My condition was the worst that UNC Hospitals had ever seen."

Although she had received a dire diagnosis she still began college.

"I wasn't going to let this hold me back," she said. Magnolia kept searching for answers and treatment but found it was getting more difficult for her to keep on going. Her energy levels declined. All she could do was go to class and come home.

Traveling all over the U.S. for treatment options, the only thing that helped her condition was having an outpatient procedure where the cysts were drained right behind her stomach every few months.

"As time kept going on, I dropped down to 100 pounds and I started to look sick," she said.

In October of 2016 when she went in for the cyst draining, she woke up screaming. The person doing the procedure punctured and drained her gallbladder rather than drain the cysts.

"This left bile freely flowing in my abdominal cavity. I was then hospitalized and had to undergo multiple corrective procedures, all of which seemed to make my condition worse and worse."

She had to drop out of school because she couldn't catch up on her work and that caused her to lose her scholarships and financial aid.

"There was no way for me to pay for school," she said.

"I sat in the hospital and watched every brick I had laid for myself crumble around me. I was at the point of giving up. There was no way that this could get better" Magnolia said.

About that time is when Dr. Chirag Desai walked into her hospital room, and with no explanation whatsoever, told her "he was going to wait to take my gallbladder out when he took out my pancreas."

"Now, to be honest, I was on pain medication at this point due to all of the surgeries, but the only thing I remember was my mom picking her jaw off the floor and asking why this man wanted my pancreas," Magnolia said.

The doctor said he had been recruited to UNC hospital to create a program around this experimental transplant, and that she and her mom should give him a chance to change Magnolia's life.

She didn't have anything to lose, so why not?

The doctor explained the complicated procedure where he would take out her pancreas, dissolve it down to the islet cells that produce insulin, transplant them into my liver, which would make the liver turn into a hybrid organ. If the liver accepted the islet cells, it would act as the endocrine function of her pancreas and control my blood sugars instead of becoming a severely brittle diabetic.

Since the procedure was new to Magnolia and her mom, they asked for time to do more research. Dr. Desai gave Magnolia no guarantees that this transplant would fix her issues.

"It was not a promise, but it was a glimmer of hope. One that I had not seen in a long, long time. I wasn't ready to give up quite yet."

While waiting for the procedure, she decided to transfer to UNCG to continue her education where she was closer to the hospital.

She was also prepped for a recovery after the surgery that could last at least six months with very light physical activity and a year before she got back to normal.

She had the procedure and recovered a day at a time. Her life took on a new beginning after being so sick for so long.

In May of 2020, with academic honors, Magnolia graduated from UNCG and was subsequently chosen to become a Lead for North Carolina Fellow, and moved to begin her job with the Town of Rutherfordton.

She even became a Rutherfordton firefighter in 2021.

"I have devoted myself to helping others, because that is what I've been called to do," she said.

With the transplant five years ago, none of this would be possible.

Magnolia has a lot going on these days, and she admits she gets tired but said it's a "good kind of tired." She has learned how to say "no" to obligations rather than "I can't."

"And it's all because of the hope and life that my islet cell transplant brought me. I can't help but feel an overwhelming sense of gratitude for my entire transplant experience, and I wouldn't change a single thing about it."

Although she didn't have a solid organ transplant, medical research shows that it is inevitable that she will need a lung transplant one day due to CF and she hopes people will register as organ donors.

"One donor can save and heal more than 75 lives," she said.

"It's my dream that CF will one day stand for 'Cure Found,' and your donation can help that happen," she said.