Looks like I will be in the hospital a bit longer than we originally thought. My liver numbers are elevated - could be drug related, could be tied to graft vs. host - either way they need to see the trajectory before I go home. Since the liver numbers are drawn each morning I am here a few more mornings to see if the direction they go. My treatment plan will be adjusted accordingly (possibly daily) and probably involve adjusting my steroid medications.
This is a hassle in that it has me in the hospital longer than otherwise but is entirely manageable to get stabilized. Just need some time.
So what the heck?? - if you missed Monday's update...I am back in the hospital as of Saturday 12/11 admitted with low blood pressure, a fever and rash. The blood pressure improved with fluids and steroids. The rash brought under control with steroids and the passage of time. The fever was treated with antibiotics. Today (12/15) I am feeling really good - no fever, blood pressure normal and rash rapidly disappearing.
So where did this all come from...When things like this happen, the usual suspects always seem to be an infection. graft vs host or drug reaction. So far all my cultures have come back clean (no growth of an infection). This may be a drug reaction to an antiviral medicine. I've been on that for awhile but my body may be reacting differently post DLI. Finally (and this is the leading likely diagnosis) this is all likely tied to graft vs. host an expected side effect of the Donor Lymphocyte
infusion (DLI) I had Tuesday 12/8. The infusion is the one we've been waiting for to give my immune system a boost helping keep the leukemia at bay. The immune system in overdrive can cause GVH which is my immune system going after any organ it sees as foreign (skin, liver) or compromised cell (leukemia). So it is a good thing that has to be managed which is happening now in the hospital.
When will I go home? That is unclear until my liver numbers stabilize...not before Friday. Will keep you posted.
Thanks for checking in!!
Love Moe
Maureen was admitted to Beth Israel Deaconess in Boston MA 12/16/14 with Acute Myloid Leukemia. She underwent two rounds of high intensity chemo followed by a transplant March 19, 2015. The leukemia was in remission for several months but returned late August '15. Since then Maureen has had several different types of treatment both as an inpatient and outpatient. Currently Maureen is in the hospital (10/17) receiving two different chemo regimens. She hopes to go home soon.
Again I give thanks for all the love, support and awesome medical staff that you have surrounding you. I hope that you get to go home sooner rather than later to that lovely family of yours. Much love to you Moe!! Karen
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