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Excerpt from the Book

Graft Versus Host

The rash that Angela noticed quickly spread all over Jimmy’s back and stomach. It was a deep red rash that began to blister in several spots. Dr. Fitzpatrick also detected an appearance of white spots on Jimmy’s tongue and bumps on the inside of his mouth. A new battery of tests was conducted, and the preliminary thinking was that Jimmy had developed graft versus host disease. This is what the Macombers had feared the most, and with good reason.

On day 170, nearly six full months after the bone marrow transplant, Jimmy had the worst night of his life. It began just after midnight when Jimmy began taking very rapid, shallow breaths. He wasn’t getting enough oxygen. As his oxygen saturation plunged, his breathing rate accelerated. When Jimmy became quite pale and his eyes rolled back in his head, Glenn and Eileen, who hadn’t left the hospital in two days, thought it might be time to call a priest.

Jimmy was close to blacking out when the night nurse gave him a high dose of Iloprost, which dilated Jimmy’s blood vessels, allowing for increased blood flow. Jimmy’s oxygen saturation levels came back quickly, and it appeared the worst was over. Jimmy had a few milder incidents the next day, and that’s when his lab results showed elevated liver enzymes, and a confirmed diagnosis of GVHD.

Jimmy’s GVHD was considered chronic because it occurred more than 100 days after the bone marrow transplant. Before 100 days, GVHD is considered acute. Both varieties are a common complication of bone marrow transplants in which the T-cells in the donor’s bone marrow begin to attack the host’s tissues and organs. That’s part of the danger. The other, more serious part is that GVHD increases the risk of infection. It is the infections that are most often the cause of death for post bone marrow transplant patients. In one respect, Jimmy was fortunate. Because he developed GVHD nearly six months into his treatment, his blood counts were up, and he was stronger than most patients who had to wage war with GVHD.

Jimmy’s new list of problems and conditions included dry, stinging eyes, because his tear ducts were compromised. He was unable to secrete enough saliva to lubricate his esophagus, so swallowing and eating were more difficult. He had a burning sensation in his mouth when he ate acidic foods or brushed his teeth. He was jaundice. He had heartburn. He had it all!

And so the drugs started flowing through his veins at a hastened pace.
“My good friends prednisone and cyclosporine will help me through this,” Jimmy told his parents. “And they’ve brought along a new guy called ozothioprine.”
Glenn and Eileen tried to smile.

Read the rest of the chapter by clicking here (PDF).

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