From: “Smith, Dianne” Dianne.Smith@mpls.frb.org
We got home from our third hospital stay last evening (11 days). We all hope and pray that it was our last major setback. We’re all getting exhausted, especially Jenny.
As Val told you last week, Jenny had clostridium difficile (C-diff, a certain bacteria) in her stomach. They also found adeno virus in her stools. Thankfully, both these problems were treatable.
By Monday Jenny’s liver was really struggling (the ALT was 298 and bilirubin got as high as 12.2). Jenny couldn’t swallow pills due to the C-diff in her stomach, she would just vomit them up. So the doctors had to convert the oral doses of her meds to IV doses.
On Thursday evening, Jenny had an hour and a half episode of not knowing who she was, etc.. A nurse stayed with us the whole time and she said she had never seen anything like it before. We were really getting worried. The vomitting and diarrhea stopped, but Jenny was shaking terribly and she was getting weaker. She couldn’t eat or drink anything.
On Saturday, I asked the nurse for a list of Jenny’s meds. After I got it, I went down to Pharmacy to get help with the conversions from oral meds to IV meds. It turns out that whoever did the conversion for the cyclosporine dose (CSA) made a huge error. At home, Jenny was getting 200 mg CSA twice daily in pills and the dosage book says to give her one third the dose in IV form. Approximately 65 mg of CSA would be correct, but they were giving her 135 mg twice a day. This is more than double the dosage, and this was why she became toxic again. As sick as her liver was, they were over-dosing her with a very toxic drug for 7 days and her liver had to metabolize this unreasonable amount of CSA on top of everything else.
I went ballistic, I made it clear that this was totally unacceptable. I couldn’t stop until I had unloaded everything….how upset we were about the last over-dose of acyclovir/gancyclovir, the filthy hospital rooms, the gross refigerators for our immune suppressed children, the total lack of follow-up, and the incompetence of the staff. (When I’m on the phone telling a friend how I was raving mad, Jenny just smiles and nods her head ‘yes’.) She has said over and over, “thanks for figuring out what was wrong”. We can only imagine what might have happened if it had continued much longer.
It’s hard to relay all of this to you without sounding like I’m patting myself on the back. That’s not my intention; my only goal is to get Jenny through this bone marrow transplant safely. For those families that are coming to Minnesota for a bone marrow transplant soon, these are things that you should know.
Luckily, Jenny is a fighter and she has once again fought back and won. As you can imagine, it is very difficult to have any faith in the doctors. No matter how sick she gets, they never check or recheck anything, they always say this recovery is a rollercoaster ride and leave it at that. We wonder how much of that is due to carelessness and error (not to mention the 5 children that have died on the BMT Peds ward since we first got there in June). Ooops, I’m starting to rant again.
Until next time, please keep us in your thoughts and prayers.
Love from the Smiths
