A retired nurse receives a little-known treatment to keep her body from rejecting her new lungs.
Jan Rueb cares for her new lungs like the gift they are.
"After the transplant, I was like a bird let out of a cage," she said. "I feel I owe it to my donor and her mother to do all I can to care for the lungs I received."
A retired school nurse, Rueb, 62, readily admits that years of smoking ruined her lungs and resulted in chronic obstructive pulmonary disease. She had quit smoking because of her son 12 years before her 2002 double-lung transplant, but it was too late.
"As a nurse, I know that once the damage is done, it's done," Rueb said. "I am in a position to teach others, particularly children, that smoking is detrimental to your health."
Rueb's lungs first belonged to a healthy 32-year-old woman who died in an automobile accident. She had been a certified nurse's aide.
"Because of the sacrifice of my donor and her family, I have been living almost seven years with these lungs," Rueb said. "Without them, I might not have seen my son graduate from high school or college."
Now, she receives a little-known treatment each month to help her keep the lungs that have given her new life. Anti-rejection medications weren't doing enough, so her St. Louis doctors prescribed photopheresis, she said. She now undergoes two treatments each month to keep her body from rejecting her donated lungs.
The only Oklahoma group certified to provide the treatment is the Oklahoma Blood Institute, which sends a trained nurse and a special machine to provide the treatment in designated hospitals. So far, no Tulsa hospital accommodates photopheresis, so patients must travel to Oklahoma City.
Each treatment lasts about four hours, during which the machine takes the patient's blood and spins it to separate the white and red blood cells. The red blood cells are given back to the patient immediately. The white cells are treated with a medication that is activated under ultraviolet light, then returned to the patient, Rueb said.
"As the new white cells come out and find the changed lymphocytes, they attack those instead of the donated organ," she said.
Photopheresis was first approved in the late 1980s for a rare skin cancer called cutaneous T-cell lymphoma, said the OBI's medical director, Dr. James W. Smith. So far, Medicare doesn't pay for its use in lung transplant patients, but other insurers do, he said. Medicare does pay for the treatment for heart transplant patients.
"Jan has fought an uphill fight trying to get Medicare to pay for it," Smith said.
Like Rueb, most patients generally start out with a prescription for 24 treatments, which can be extremely costly without insurance. Each treatment costs $4,800, she said. Thankfully, a secondary insurance plan pays on her treatments, but she is about to reach her lifetime maximum, Rueb said.
"Organ donor awareness is acutely important. But it doesn't stop there," she said. "There's so much more that goes on later. OBI is so instrumental in providing this. They're on the cutting edge of saving lives."
Smith said OBI draws photopheresis patients from Oklahoma, Arkansas and Missouri.
"It's a rather obscure therapy," he said.
But it is working for Rueb.
Her energy level has improved, and she no longer has a frequent cough. She has enough energy to work out on her treadmill to try to lose some of the weight brought on by the steroids she must take.
Most importantly, her body shows no signs of rejecting her lungs.
"Every day I have is a good day," she said.
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