Monday, July 9th, 2007 (+454)
Well, it has been more than a month since I last posted. For those who still read the blog I thought I should probably provide an update.
We are now in Nantucket. We arrived here about a month ago. Since our arrival Jackie has struggled with some graft-versus-host disease (GvHD) issues. As you may recall from my last post she was doing well and the decision was made during our last Mayo Clinic visit to taper her steroid usage to zero. Although during our last visit her steroid usage was not that high, the goal is to reduce all meds to zero. We were able to get Jackie to a 5Mg dose of Prednisone every other day. At this level she began experiencing some of the classic GvHD symptoms. She began to develop rashes on her arms and especially her hands. She also began to experience gastrointestinal difficulties which we believe to be a case of GvHD in her stomach/gut. She also began to experience FUO (fevers of unknown origin). These typically ranged up to 100.8, but below the Mayo Clinic threshold of 101.6 which often spells more serious trouble. For the last week she has not felt well at all.
She has, however, improved a bit after upping her Prednisone dosage from 5Mg every other day to 5Mg daily. This is still a very tiny dosage and is on the order of what he body produces on a daily basis. We are still considering whether to reintroduce her Entrocort meds which are typically used to treat Chrohn's Disease. In the past it was very effective at helping with her gut/stomach GvHD. While at the Mayo Clinic they restarted her Penicillin as well as one of her anti-fungal meds. It is possible the Penicillin has wiped out some of the "good" bacteria that normally lives in the gut.
For anyone else facing GvHD it might be interesting not note a couple of CBC blood tests taken 5 days apart. The first CBC showed an elevated WBC count of 15.7, a RBC count of 3.65, Hemoglobin of 11.4, Platelet count of 284, and a total Lymphocyte count of 43.6. This CBC was taken while she was experiencing FOU and bad rashes. After upping the Prednisone dosage a small amount her counts 5 days later have returned to a more normal WBC count of 9.4 (withing normal range of 4.8-10.8), RBC count of 3.78 (normal above 4.8), Hemoglobin of 11.6 (normal 12-16), Platelets of 264 (normal 150-400), and Lymphocytes count of 34.1 (normal 20-45). The first test showed eight CBC components "out of whack" and the most recent test showed only four components "out of whack" - and only by a small amount. So a slight amount of steroids has helped make a big difference.
So...the process continues. Still some ups and downs, but overall still some very slow improvement with no sign of the original disease reoccurring. We return to the Mayo Clinic at the end of September
Until next time....
Bruce and Jackie
From Nantucket, MA