How medical marijuana has helped Minnesota man cope with '1 in a million' disease
Chris Nelson of Moorhead wanted to die as a child because he felt miserable. It took him years to find out why he couldn't keep food down and maintain weight.
MOORHEAD, Minn. — Chris Nelson’s life has been plagued by a mysterious illness that began in childhood and made him so miserable that he wanted to die at the age of 8.
“I ended up getting sick and having emotional issues,” he said.
At first, doctors suspected the Moorhead man was suffering from fetal alcohol syndrome.
Over time, his illness kept getting worse. By the time he was in his 20s, his constant nausea made holding a job difficult.
His symptoms skyrocketed eight years ago. “I ended up having an episode,” he said. While visiting a friend, he became “super woozy” and went outside for fresh air and passed out.
He woke up, managed to get to his car 15 feet away, and then passed out again. With help from the friend, he was taken to a hospital emergency room, where his blood hemoglobin level was found to be only a third of the level needed to survive.
But the cause of his illness remained a mystery — and the unseen damage it was causing his body wasn’t yet known.
“I didn’t know my intestines were falling apart,” said Nelson, now 33.
His weight, which was 300 pounds when he was 22 years old, declined until he became weak and frail.
“I started gradually falling apart after that,” he said. His weight steadily fell until he was a haggard 110 pounds. Convinced he was dying, Nelson gave his home to his parents to sell and summoned the energy to drive to Colorado so he could see the Rocky Mountains before he died. He later drove to Arizona.
“I was just spiraling into depression,” he said. “I began to come to terms that I was going to die.”
In Arizona, he enrolled in the medical marijuana program — and found it helped his symptoms.
“It was the only thing that allowed me to eat and actually feel good,” he said.
At one point in his ordeal, because his white blood cell count was alarmingly high, doctors suspected he had leukemia. Later, while hospitalized in Fergus Falls, his doctors thought he had cancer.
That led to a referral to Mayo Clinic, where specialists diagnosed the illness that had plagued him since childhood: primary intestinal lymphangiectasia , better known as Waldmann disease.
The rare digestive disorder is characterized by abnormally enlarged lymph vessels in the lining of the small intestine, causing swelling of the limbs and abdominal discomfort.
Nelson said his diagnosis is one in a million. The cause of Waldmann disease is unknown and can be fatal if unresponsive to treatment.
Doctors have placed Nelson on a special high-protein, low-fat diet, and he takes several vitamins, including vitamin D, vitamin C and iron.
He eats a lot of seafood but finds fruits and vegetables difficult to digest.
The only medication that provides relief for his symptoms, and allows him to live a more or less normal life, is medical marijuana. He is enrolled in Minnesota’s medical marijuana program.
Even taking medical marijuana or medicinal derivatives several times a day, Nelson still battles nausea and anxiety, which he said is a result of his illness and traumatic experiences.
In 2019, he entered hospice care, but his condition improved because he was taking medical marijuana, and he was released.
“I’m doing a lot better,” he said, “I tried everything. I tried a multitude of meds.”
At first, his doctors were reluctant to put him on medical marijuana, prescribing pharmaceutical drugs. “Pharmaceuticals gave me an extreme amount of pain,” he said.
The specialists at Mayo wanted to remove damaged sections of his small intestine as the disease progressed, but Nelson refused.
“It scarred me so bad I wasn’t absorbing anything,” accounting for his years of weight loss. But his condition has gradually improved, and his weight is now stable at 220 pounds — twice the 110 pounds he once weighed.
During the worst of his illness, when he thought he was dying, Nelson broke up with his girlfriend. After his health improved, they got back together in 2017 and were married.
“He didn’t want me to watch him die,” said Jenni Nelson. “He was very, very, very frail when we got back together. It was hard to see him use a cane.”
To maintain his health, Nelson must take medical marijuana treatments that cost $800 to $1,000 per month, a cost not covered by his health insurance. He also can’t take his medicine across the border to Fargo to take before a meal at a restaurant.
“I feel like a felon,” he said. “It’s kind of frustrating.”
He also feels discriminated against, since society frowns on the use of medical marijuana, even though it is legal.
Nelson credits the drug with keeping him alive and allowing him to cope with his life-altering Waldmann disease. Without it, he wouldn’t be able to eat and hold food down because of his nausea, caused by chronic inflammation of his digestive tract.
"I cannot stop taking it, it’s a preventative medicine," he said.
Nelson said he has been unable to hold down a job because of his illness, but now that he is doing better wants to find work, possibly as a self-employed mechanic.
“All I’ve ever wanted to do is live a normal life,” he said. “I really want to get out there. I know I can work. It gives me purpose.
“I’ve never known what being normal feels like,” he said. “I guess this is what it feels like. I’m just happy to be alive. Every day is a blessing.”