No one knows how the word “lupus,” meaning “wolf,” came to be associated with the disease, but there is no doubt as to its ravening effects on the body.
Larry N., of Hendersonville, North Carolina, knows that only too well.
He and his wife, Cindy, ran a thriving plumbing business from their home, which was then in La Plata, Maryland. They were also new parents. Ryland, their son, was two months old. This was in 1999.
Not Flu but Lupus
When Larry, who ordinarily enjoyed good health, developed flu-like symptoms at age
32, doctors treated him with antibiotics. But his 104 degree fever continued.
Finally, his doctor diagnosed systemic lupus. With lupus, the immune system mistakenly attacks healthy cells and tissues.
Unfortunately, the doctor prescribed the wrong medicine, and Larry’s condition worsened.
“I had to carry him to the bathroom,” Cindy said. “Lupus affects you head to toe. His joints ached terribly. We didn’t realize the severity of his illness.”
Doctors Recommend NIH
With his fever still raging three weeks later, Larry was hospitalized. Doctors said his blood pressure was so high they feared he’d have a stroke and recommended he go to the National Institutes of Health in Bethesda, Maryland.
Cindy went home and looked up the number, then had the good fortune of speaking with one of the world’s leading nephrologists, Dr. James E. Balow, who told her it was “a miracle that I even answered the phone.”
Wrong Medications
After receiving a faxed report of Larry’s blood work, Dr. Balow said to bring him immediately to NIH and to refuse all medications since he was getting the wrong ones. He told her Larry was dying.
Returning to the hospital, Cindy signed for her husband’s release and insisted on driving him to Bethesda, nearly two hours away, despite a nurse’s prediction that he wouldn’t survive the trip.
‘Raw Hamburger’
On arrival, Larry was stabilized, then admitted to ICU. Diagnostic tests revealed extensive damage to his left lung which “looked like raw hamburger,” Cindy said.
Surgery was scheduled, but doctors said they doubted Larry would live even two more days.
We’ve Done All We Can’
He made it through the 12-hour surgery to remove the lung but had to be placed on life support. In the days following, Larry spiked fevers and underwent transfusions. When his right lung started to collapse, doctors told Cindy, “We’ve done all we can do.”
Cindy headed to the chapel and prayed fervently for her husband.
Forty-five minutes later, doctors said, “There is one thing we can try, though he could die.”
Blood Cleansing
The procedure is called plasmapheresis. It involves exchanging a patient’s blood plasma with a replacement solution.
After four days of this blood cleansing, Larry began to improve and finally woke up from a coma. He went into rehab “and had to learn to walk and eat all over again,” Cindy said.
On April 5, 2000, after spending nearly four months at NIH, he was well enough to go home, where he continued to improve. The family then moved to Hendersonville.
Secret of Strength
Larry takes Airlift Hope flights to NIH for regular check-ups. He currently travels there every three months to be treated by Dr. Gabor Illei at NIH. Dr. Illei’s research includes clinical studies in systemic autoimmune diseases such as lupus.
“Airlift Hope has been a godsend. Every pilot has been phenomenal,” Cindy said.
When asked, “What is the secret of your strength that enables you to keep fighting?” Larry replied, “Cindy and Ryland. I want to see our son grow up.”
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