'The iron levels just kept going up… it was amazing'

Hemochromatosis Awareness Month

'The iron levels just kept going up… it was amazing'

By Dennis Thompson
HealthDay Reporter

(HealthDay News) -- When Harry Kieffer took on a new job back in 1992, opening up a siding plant for International Paper in Cordele , Ga. , he worked some long, hard hours.

So he wasn't surprised when, after a number of 60- to 80-hour weeks, fatigue set in.

"He was getting very fatigued, that was one of the first things," said his wife, Chris Kieffer. "He'd want to fall asleep at his desk about 2 o'clock in the afternoon."

But then Harry started noticing other problems. Stiffness in his joints. Abdominal pains. Heart flutters.

"One day in his recliner his heart wouldn't stop racing," his wife said. "It just kept racing and racing. The hospital ran all kinds of tests on him but couldn't find anything wrong."

Before taking the job, Harry and his wife had filed for new life insurance policies. They got a notice back that his coverage had been declined because of elevated enzyme levels found in a blood test.

That was the last straw. Harry went looking for some answers.

Unfortunately, none were forthcoming -- a battery of tests found no cause for his symptoms.

Finally, someone in their family mentioned it might be a little-known disease called hemochromatosis. The Kieffers mentioned it to Harry's doctor, who agreed to test for the condition.

"When they ran blood tests, his iron levels were far higher than normal," Chris Kieffer recalled. "The iron levels just kept going up. It kept multiplying. It was amazing.

After three months, the doctor performed a liver biopsy -- then one of the best ways to determine whether a person might have hemochromatosis.

"It came back that he had fibrosis of the liver," Chris said. "That is the stage before cirrhosis."

The doctors put him on what they thought was an aggressive schedule of phlebotomy, drawing a pint of blood from him a week. But it wasn't aggressive enough, as things turned out. After a year with little gain, they increased to two pints a week.

Eighteen months and 103 pints of blood later, Harry Kieffer was a changed man. His symptoms had mostly abated, except for the arthritis, which bothers him to this day.

That might seem like a lot of blood lost, but Harry, now 65, shrugs off the treatment as "a walk in the park compared to something like chemotherapy."

He still has blood taken, about four pints a year, as maintenance treatment.

"It's like giving blood," Harry said. "If you went to the Red Cross and gave blood, it would be the same thing."