Blood disorders are not easy to diagnose. Lisa Gordanier has first-hand experience with this. It took over a year for doctors to figure out why her face would become flush and hot and her ears would burn to the point where her husband would drape cold cloths on her face throughout the day.

Lisa saw a dermatologist who diagnosed her with rosacea. Then there were blood tests. One doctor saw nothing abnormal, but another became alarmed and sent Lisa to Seattle Cancer Care Alliance, specifically to Dr. Paul Hendrie, a hematology specialist who treats patients for blood disorders and cancers like leukemia and lymphoma.

"In 2002, Lisa was referred to SCCA with suspicion of polycythemia vera because of her persistently high hematocrit and white blood cell count, a good pick-up by her referring physician,” says Hendrie. “We ruled out other secondary causes of high red blood cell counts such as hypoxia and tumors of the kidney. We also checked a genetic test for chronic myelogenous leukemia (CML) which is also a myeloproliferative neoplasm, but with a worse prognosis, but effective treatments are available.” 

Lisa was diagnosed with a condition called polycythemia vera. Her bone marrow was over-producing red blood cells to the point that they were building up and thickening in her veins. This condition often goes unnoticed until someone has a blood clot or stroke.

“Her diagnosis was made by a high leukocyte alkaline phosphatase (LAP) score and a suppressed erythropoietin level, the hormone made by the kidney to stimulate red blood cell production.  A few years later, we confirmed the diagnosis with the now available genetic test for this disorder called JAK2 V617F, a mutated protein involved in regulating blood cell growth," Hendrie says.

Only one percent of the population in the United States has this condition. Lisa is also in the super minority because it most often affects older men. She received her diagnosis in 2002 when she was 48 years old.

“This floored me,” Lisa says. I have no history. I’m very healthy. But there is nothing doctors know of that causes this. It’s just something that can happen at the DNA level.”

Like many people with a life-threatening disease, Lisa feared this was the beginning of the end. “On the web, I read somewhere that the life expectancy for someone with this disease is 10 to 15 years. But that number includes people who have strokes and things,” she says.

There is no cure, but Lisa can manage her disease with a fairly low-tech treatment—an “elegant solution” as Lisa’s husband likes to say.

“I do a phlebotomy at Seattle Cancer Care Alliance. Once every three to four weeks I get a CBC (complete blood count) and the doctor decides when my levels are too high. Then I go to the fifth floor and have about a pint of blood removed. This happens every eight to 10 weeks. It’s like giving blood,” Lisa says.

So far, she says there have been some ups and downs when it comes to how often she has to have a phlebotomy, but it’s become a part of her life now.

“When I was going to travel to Peru, I was going to be at high altitudes,” Lisa says. “Dr. Hendrie helped me come up with a plan so I could travel safely.”

At high altitudes, “the oxygen tension is decreased,” says Hendrie, so the body compensates by increasing the HCT.  “In a person with polycythemia vera, the HCT is already high and a further increase could potentially increase the risk for stroke,” he says.

There aren’t any real symptoms to polycythemia vera that Lisa can speak of. She doesn’t feel any different when her blood counts are up or down, except for the fact that she is often low in iron which has caused her to have three “weird things” happen: she craves and chews ice; she has restless leg syndrome; and has tissue irritation on her tongue when her iron is low.

“We have investigated these things and figured them out during the first year or so of treatment,” Lisa says. “I have been extremely pleased with my care at SCCA. Walking up to the front door makes you feel weird, especially at first. It’s surreal; you think, ‘I’m not really a patient at a cancer treatment clinic, am I?’ But it’s very comfortable and it’s a pleasant place to go, even though you wish you didn’t have to be there. Somehow the staff manages to combine the qualities of extreme professionalism with a warm, friendly attitude. They’re absolutely great.”

Lisa isn’t sure what she’ll need in the future in terms of treatment. “My next phase, if it gets more serious, is call the ‘spent’ phase when the bone marrow slows the production of blood cells. And if the phlebotomies stop working, there are medications that I can take.”

But until she has something more to worry about, Lisa is devoted to her career as a chef and most recently a copyeditor and recipe tester of cookbooks. She’s also an accomplished woodwind musician and spent about 15 years playing professionally before changing careers.