Today saw very little improvement in Jackie's condition. In fact this morning she was worse than yesterday. She was severely dehydrated. Last night she had a fever of almost 103.
She was scheduled for a bone marrow biopsy early this morning. When we arrived her heart rate and blood pressure were high and they immediately began giving her IV fluids. They gave her a liter before the procedure and another liter after. She had a bilateral bone marrow biopsy which resulted in two holes being poked in her hips instead of the usual one.
After receiving the fluids she felt better and her blood pressure and heart rate returned to normal. She is still finding it impossible to eat anything. Due to the C-Diff her stomach is very upset and anything she eats or drinks causes instant pain and nausea. It is as bad as after the transplant. Don't bother sending suggestions for foods she might be able to eat. I've heard them all. I went to the grocery store and bought all the usual candidates for eating while dealing with upset stomach. When she gets like this there isn't much that can be done until the meds take effect and begin to get the C-Diff under control. It usually takes 3-4 days. I'm hoping by tomorrow she will begin to get some relief. This evening I THINK I can detect some minor improvement.
We meet with the transplant doctor (Dr. Hogan) tomorrow afternoon. He should have some preliminary results from the bone marrow biopsy as well as results from the CT scans. I think if there were anything significant on the CT scans we would have received a call from one of the PA/RN transplant coordinators.
Technical: For all the CLL patients who are reading this blog there are some clues here that might be helpful as you go through a transplant. It is an after-the-fact analysis of what we did wrong with regard to the current C-Diff episode.
We missed the fact that Jackie had another bout of C-Diff. Although she had dealt with the problem several times before, we (and the docs) should have suspected C-Diff. We thought she was having some gastric distress due to GvHD in the stomach and gut. I don't believe this was ever the case. Initial tests from stool samples were negative for C-Diff. This in spite of the fact that there were clear signs of an active C-Diff flare. As it turns out there are a couple of different assay tests for C-Diff; some less accurate than others. It is also possible the diagnosis was missed due to the fact that the sample was not "fresh". Samples were FedEx'd to Rochester from Tulsa.
This event happened as she moved to a once-a-day dose of 25 mg of Cyclosporine. As I mentioned we suspected GvHD. We increased her Cyclosporine and Prednisone dosage to the prior level (50 mg/day and 10 mg/day respectively). This was probably a mistake. The goal is to get to a level of zero on all dosages and get her immune system ready to deal with minor problems without the need for antibiotic, antifungal, etc. prophylaxis. It is the antibiotic prophylaxis that causes the gut to not be able to repel the C-Diff invasion. If she can get to a level of stasis the normal gut flora should be able to crowd out C-Diff that causes the problem. So the lesson is that sometimes the simple answer is the correct answer (Occam's Razor). The good news through all this is that it appear that her immune system has managed to mount a robust defense to the perceived threat from the C-Diff flare-up. Her latest CBC showed a slightly lower level of WBCs and a lower ANC with good counts for RBC and Hgl with stable platelets.
Bruce and Jackie
From Rochester, MN