The MDS Beacon™

When Carl Riegel was diagnosed with myelodysplastic syndromes in 2006, one of his main concerns was his children.

“I was starting my second batch of kids,” said Riegel, 63. “I really wasn’t planning on checking out early.”

Riegel has a 10 year old daughter, as well as a daughter who is 34 and a son who is 32 from his first marriage. With the prospect of myelodysplastic syndromes (MDS) looming, Riegel said he and his wife took the news very seriously and immediately started charting his blood counts.

A Vietnam veteran born in St. Louis, Riegel was living in Florida when he was originally diagnosed.

After being referred to hematologists and oncologists, Riegel’s hematologist insisted on a bone marrow biopsy. At that point, like so many MDS patients, Riegel was diagnosed with a disease he had never heard of.

“[My hematologist] explicitly told me not to go on the Internet, but of course I went to the Internet,” said Riegel. “For a while, I was really frightened.”

At the time of his diagnosis, Riegel was a department chair at Florida Atlantic University, but the fatigue from MDS increased until he decided he could no longer handle the stress of administrative duties for 12 months out of the year. Instead, his wife secured an administrative position at Missouri State University, and Riegel obtained a nine month teaching position there.

Riegel has taught at multiple universities, including the University of Guelph in Guelph, Ontario and Washington State University, as well as Florida Atlantic University and Missouri State University. He specializes in tourism marketing, destination development, and the business end of hospitality.

“I like teaching. I like doing research. I like the academic life,” Riegel said.

But MDS has definitely impacted his career. He has cut back to a nine month teaching schedule because physically teaching classes has become exhausting. In addition, Riegel now only teaches one or two classes in person and teaches as many as possible online.

One aspect of MDS that Riegel finds most frustrating is the subtlety of the disease.

“Let’s say you have really aggressive cancer or something like that, there’s immediate stuff to deal with,” Riegel said. “At least in my experience, this is sort of a gradual deterioration, and that’s so subtle sometimes.”

During a physical last year, Riegel’s doctor discovered melanoma on Riegel’s nose, and right away he was able to take steps to get it removed. However, there is no such quick fix with MDS.

Riegel is undergoing supportive care, and his blood counts are stable. However, he is too old for a bone marrow transplant, and due to a high concentration of iron in his blood, he cannot receive transfusions.

Additionally, Riegel has found subtle evidence that his energy has decreased. He can no longer climb multiple flights of stairs, and he now does one of his favorite chores, mowing the grass, over multiple days.

Although he has been experiencing changes in energy level, Riegel works to keep busy. Last summer was the first that he did not work in 20 years, and he admits his biggest mistake was allowing himself to become bored. This summer, he is working on writing and other academic responsibilities. He has planned to work on more than he will probably be able to complete, he admitted.

“I would hate to have the degree of disability to where I couldn’t work, and I know a lot of people who are at that stage. I’m fortunate to have the job I do,” said Riegel.

While the impact of MDS on Riegel’s life has been gradual, his response has been gradual as well, as he has eventually come to accept the reality. He suggests that dealing with MDS is a process that takes time.

“I think you’ve just got to somehow come to terms with it and realize it may shorten your life, but it may not, especially for those of us who were diagnosed young,” said Riegel. “Just figure out a way to go about your business.”

But Riegel above all maintains a level of perspective: “All that being said, it could be a lot worse.”