Change in medication threatens Reibach's life

Medication can sometimes save a life.

And a change in medication can sometimes threaten it.

A case in point is Tribal member and Tribal Lands Manager Jan Michael Reibach, who was diagnosed with a hereditary case of Protein Enzyme C Deficiency in 1994.

The disease, which affects about 600,000 people or 0.2 percent of Americans, causes Reibach's body to grow blood clots.

Sometimes huge clots.

In 1994, before much was known about the disease, it was growing blood clots in Reibach's veins. Doctors called it thrombophilia, a term referring generally to all coagulation problems.

Two clots in Reibach's body broke off, causing strokes. The strokes left scar tissue on his brain that led to seizures. The seizures scared the wits out of Reibach's young son, Shane Michael, who also is a member of the Tribe.

Before it was all figured out, Reibach had suffered paralysis and could not walk. Doctors warned him and his family that he might have only days to live.

"It was a lot more rare in 1994," says Reibach, "and they didn't know what it was. My uncle, Michael Standing Elk Reibach (who walked on in 2005), came to see me in the hospital. He brought an eagle feather and he was praying over me. My doctor came in and said, 'Is this guy Indian?' And Michael told him, yeah, I was a Grand Ronde Indian. The doctor ran down the hall and told my wife, 'I think I know what he has.' "

It was Protein Enzyme C Deficiency.

In those days, some physicians thought there might be a connection between the disease and having Indian blood.

Once he had the disease nailed down, Reibach's doctor prescribed Coumadin, a blood thinning medication that stopped the blood clots, strokes and seizures.

It took nearly two years of physical and speech therapy for Reibach to regain his functions.

Reibach had been on Coumadin since then until recently, when his primary care physician decided to try a different blood thinning medication, Pradaxa, even though it was not tested or recommended for people with Protein Enzyme C Deficiency.

Pradaxa was never tested for Protein Enzyme C Deficiency, reports a medical scientist for Boehringer Ingelheim Pharmaceuticals, maker of Pradaxa, with U.S. offices in Richfield, Conn.

The doctor's idea, Reibach says, was that Pradaxa would be easier on his body than Coumadin, the medication he had been using for many years.

Like many medications, Coumadin has a reputation for being hard on the body and though Reibach had not suffered from taking it all those years, physicians often make the effort to use newer medications that promise to be easier on the body.

After the change in medications, however, the blood clots returned and Reibach found himself back to fighting blood clots, and fighting for his life in the hospital.

Reibach spent time in the hospital and underwent surgery to get rid of the blood clots that formed after he went off Coumadin.

With the decision to return Reibach to Coumadin, the success in fighting the clots was just as dramatic as in 1994.

Reibach e-mailed his family, friends and Tribe: "Today in surgery, the vascular surgeon found that there was a 100 percent HEALING in all my Iliac Veins (veins that return the blood from the legs through the hips and pelvis). They were really surprised to find that all the scars and damage from the blood clots were COMPLETELY GONE! With no trace from the prior clots at all. My circulation was tested and it is in perfect working order with no stents needed!"

"I know that this may sound weird to some," says Reibach, "but I embrace this disorder and am glad that I got to experience being a paraplegic and losing everything.  It really helped me learn compassion for others who are sick and served as an inspiration for my lifeway."

It just may be that his case will serve as a warning to others.  

Reibach says he is now working with doctors to help educate the medical community about the potential complications of new anti-coagulants for people with his condition.