Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 29, 2002

BMT + 27

Robert has kept us very busy in the last 24 hours. He has had severe diarrhea for the last few days, and last night he began to bleed fairly profusely in his stool. His abdomen also became swollen, and he was experiencing a lot of pain. An X-ray last night was inconclusive, and the doctors thought he might have a perforated bowel, which would have required
surgery. A CT scan this morning did not show any perforation, although there is a lot of swelling of his colon. He did get a tube through his nose into his stomach to relieve pressure, but this is not a dangerous procedure.

The doctors are not sure whether the intestinal inflammation is from GVH or infection, but they think GVH is most likely. They are continuing to treat both potential causes with anti-inflammatory drugs, immunosuppressants, and antibiotics. The doctors think it is most likely that the incident last night was caused by Robert’s platelets getting too low, which led to bleeding in his intestines, and that may have caused diarrhea and cramps. He has been doing better since getting platelet and blood transfusions. In general, the doctors think Robert’s skin and liver are improving (although
you can’t tell from the bilirubin), and that we have to keep a close eye on his gut.

I’m sure all your prayers for Robert are helping.

Counts