Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 17, 2002

BMT + 15

Today was another difficult day. Robert had a long night, with fairly high fever for more than 9 hours. Tylenol did not really reduce the fever much. He did sleep a lot during the night. His fever was reduced in the morning for a few hours after taking Ibuprofen, but it came back in the afternoon. When his fever comes up, Robert also has stomach pain and nausea, and just wants to sleep. After Ibuprofen in the afternoon, he felt better for a while. He got out of bed and played, and seemed his normal self. However, his fever came back again in the evening. The Ibuprofen is hard on his platelets, and he did receive another platelet transfusion today.

Today Robert also had a CT scan to look for possible infections. There were none seen, which is basically good news. The doctors are convinced he has GVHD (graft-vs.-host disease), but we don’t know why he continues to have fever. It is possible he has some infection that is not yet identified, or it may be caused by the GVHD. The skin rash is better today after increasing the steroid dose. Also, his bilirubin is slightly lower; so there is no indication of severe liver involvement. His GGT was slightly lower, from 455 to 425. This is another liver function indicator. We’ll have to keep watching these to see if his liver gets more problems from the GVHD.

Robert is now on so many drugs between steroids, antibiotics, anti-fungal, anti-nausea, anti-convulsive, antihistamine, blood pressure, pain, and immunosuppressants (not to mention blood products) that it is a challenge to get them done on time even with two lines available. The doctors are trying to balance the effect of the drugs. The steroid increases blood pressure, for example, so Robert has had to increase his blood pressure medicine. Hopefully, Robert’s condition will remain stable or improve.

Thanks for all your prayers,

Kathleen and Mark

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