Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 16, 2002

BMT + 14

Today was very rough right from the start. Robert’s counts were great but his rash was worse and his bilirubin was more than double yesterday, at 3.4. Bilirubin tracking is a useful way to judge liver function.

The doctor on duty this week, Dr. Matthay was very concerned about VOD (veno occlusive disease), which is very damaging to the livers. Also she was very concerned about the rash, which she believed was Graft vs. Host (GvH disease). She ordered a skin biopsy for the GvH and an ultrasound of his liver. Robert did not like the ultrasound but put up with the skin biopsy. I was the opposite; the skin biopsy is a lot more yucky.

Robert was very red, puffy, and covered with his rash when cousin Donna came to visit and drop off three more “men”. Donna brought him some cute books and as soon as he saw a book on Toy Story we had to search for the video also. We now have a good stash of back ups. Donna says we have a corner on the market.

Dr. Cowan, Dr. Horn and Dr. Matthay all came into check up on Robert and look at his rash.

After the review of the ultrasound, they all agreed that he does not have VOD but he does have a level two case of GvH. They are going to try to reduce some of the medications, lower cyclosporin, cut out acyclovir, and stop tobramiasin and vanchomiasin. They will up his steroids by 25% and probably give him lasiz to reduce his puffiness. Reducing the fluids in his body helps his blood pressure.

Dr. Cowan said that we do know this time he has engrafted. GvH is a result of engraftment. The question is can it be managed and can they protect his liver while doing it.

Counts