History of Essential Thrombocythemia

Shortly after meeting Scott, he injured his back. His ex-rays came back with the comment that his bones looked like that of a person with leukemia. That was rather shocking since we thought he was perfectly healthy until he hauled his daughter’s furniture up three flights of stairs trying to impress her then boyfriend and tweaked his back. Tests led to a diagnosis of Essential Thrombocythemia. It is an uncommon blood disorder where the body produces too many platelets. It isn’t curable but it’s controllable with a medication called hydroxyurea. The drug is also used to treat some types of cancer and long-term use of the drug knowingly comes with side effects. Over the past couple years, Scott’s platelet counts have increased so the doctor has had to increase the dosage that he takes. At the time his issues started, he was taking an extremely high dosage, one the doctor mentioned was the highest he had ever prescribed. Up until late last summer, he was feeling normal for a 60 year old livestock farmer that worked 10-12 hours a day, seven days a week.

In August 2021, Scott started having a lot of back pain and was really tired. He tried chiropractic’s all winter with very little relief. Back pains led to his hips aching badly. Shortly after the first of the year he started having chest pains along with the back and hip pains. Chest ex-rays were clear and he passed his stress test without problem.

He went to the hematologist in January 2022 and his bloodwork showed several areas out of the normal range; many were extremely high and many too low. His hematologist/oncologist of ten years, took Scott off the hydroxyurea to see if that was potentially the reason for the fatigue and blood work concerns.

We had hoped that after a week of relaxation in Cozumel and no hydroxyurea, we would see his pain decrease; hoping he was just over-working himself on the farm. Instead, he developed severe headaches while we were there and struggled to keep the pain under control. Nothing like being out of the country and having your spouse experiencing what appeared to be life threatening situations in the middle of the night. Needless to say we returned from our exotic vacation exhausted and scared to death. He was taking 800mg of Ibuprofin every 4 hours to be able to manage the pain that was constant.

We returned and doctored for the headaches; but they couldn’t find anything that would explain the intense headaches. If the headache went away, then the chest might hurt, or the hips or back. The intensity of the pain continued to grow as did our concerns. In March 2022, ex-rays of his back and pelvis/hips were taken since the head CT’s didn’t uncover anything serious enough to explain the headaches and the doctors were running out of ideas. The lower back showed signs of arthritis which was not a surprise as those concerns had been uncovered by the chiropractor as well.

Scott – enjoying a shady spot on our vacation to Cozumel in February 2022

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