1 year + 73
1 year +73
Monday was a long full day of appointments with lots to process. We were at chc by 8 am for a hematology appointment and scheduled blood transfusion. But Tate didn’t need it! She does need to get iron infusions started but in light of everything else it was put on the back burner. Lots of information came out of heme. A high lymphocyte count and low neutrophils support continued inflammation. Lots of discussion about long term expectations and plans as to what is and isn’t sustainable in the current treatment plan. Bottom line is although it’s clear Tates body is still fighting itself, the source is unknown as transplant “should’ve” solved this. It’s also evident that despite current efforts, things continue to progress. Without understanding exactly why something is occurring, it’s difficult to stop or gain control of it. So we keep trying.
We saw special care to monitor BP and GI as well. GI appt was positive as Tate continues to work towards getting rid of the central line. This is especially important as rheumatology wants to increase Tates immune suppression as they’re concerned about the amount of inflammation and organ involvement. Suppressed immune function and central lines are a known risk. Tate also is like a newborn with no vaccines as transplant wipes them out. Her team would like to get things moving there to provide some protection.
Kidneys and related BP were the main topic throughout the day. There have been a lot of moving pieces to get Tate into nephrology this week yet and everything has been tabled to protect the kidneys. No more steroids ever unless organ or life saving. No more ivig or med changes. No increases to immune suppression. Everything is on hold until it’s determined if her kidneys are struggling due to autoimmune/lupus or if this is injury from years of treatments and medications. Her med list is being combed to see if there’s anything we can remove. All in an effort to protect and calm her ornery kidneys.
Tate slept all day today and just wasn’t feeling well. This always makes me pause and pray for nothing new to be brewing.