Two new drugs added to prevent GVHD - WBCs almost 0
I feel like I'm in a time warp, for sure. I've been here 11 full days now and if you told me it was 4, I'd believe you. I might be repeating myself.
Things continue to go as planned. My White Blood Cell count is (point) .1 . Not much lower to go there. Normal is between 4 and 11.1. Red Blood Cell Count is 3.17 with a normal range of 4.18-5.64. And Platelets are 42 when normal is between 150 and 400.
We are all taking all the precautions we can. We've decided to just FaceTime with our kids and grandkids. The adults planned to visit and give my hubby breaks but one son was just diagnosed with Influenza A and Chicken Pox has be plaguing the young families in our life. It's strange that I lose all built up immunity to illnesses I have had and, if I had any immunity left from vaccination. I've always been curious about having my titers taken to see what immunity I still have from vaccines and childhood illnesses but never did. The protocol here is to redo all the childhood vaccines over the next few years. I will do what makes sense; our family has become very educated in that department.
I spoke with my sister who will be coming in to give Andy what will certainly be a much needed break. She is forgoing the Superbowl Parties and Bible Studies, as examples, to cut down on possible exposure. She'll wear an N95 mask in the airports and planes. She'll probably wear a mask for a while when she 1st gets here. But eventually she'll be part of the room and won't mask up. I'm sure that will be a big relief.
Interestingly, I have learned here that medical personnel purposefully don't get tested for MRSA and the like, because it would effect their work and, if they are ever hospitalized, they'd be in this inconvenient boat I'm in. When I was first diagnosed with MRSA, I asked, through tears, what to do about my loved ones, babies, etc... The doctor told me to "not sneeze on them." Well, that was helpful. Then she told me that she'd bet than any person who works in a hospital has MRSA. I've learned since, though, that there is a difference between "colonized MRSA" with rashes and sores and the type we generally carry around and generally "having MRSA." The additional issue with me is that they found a similar type of organism in my urine when I had the UTIs, One nurse bluntly said, "You'd have to pee on me for me to be worried."
I am pretty neurotic about hand washing. I just watched a documentary on Polio. Do you know that hand washing is all that's necessary to eradicate it? They have found that hand washing practices improved at the same time as the Polio vaccine came out. But the vaccine was given all the credit for the thankfully decreas in cases. I don't want to be a germ-o-phobe, but I don't want to share anything either. And I don't want to catch anything. So many people rely on the antiseptic soaps and gels. They disrupt our hormones and don't kill the flu. I'll stick with good ole soap and water when I can.
It is interesting, though. The people that work in the hospitals have full lives, go to crowded events, and have children and they come in and out of here - new ones every 12 hours. Because of the "status" as having had antibiotic resistant infections, they gown up, glove up, and mask up when they come in to my room - every time. Even if it is to give me a new white board pen. It's a hassle for them all. And the trash it generates!!!! We've offered to have Andy come to the door and they pass to him what we need so they don't have to go through it all - some have accepted with thanks. In the other rooms, they don't gown up unless there is a specific reason. And I think they can wash their hands in between patients instead of gloving up so much. I remember thinking that everyone should be treated like they have AIDs. Now I realize we'd have to change some things or we'd drown in the trash generated.
They started me on 2 new IV drugs today - that means there are always 4 - 6 IV bags hung, going into my trifusion line. My dear friend and new AI mentor, Tom, has be getting hooked on this way of getting information. Fortunately, everything it has told me about the care I am receiving has exactly mirrored what we are doing. I asked it about the two drugs:
Tacrolimus & CellCept Work Together
- Both suppress the immune system, but they work differently.
- Tacrolimus blocks T-cell activation, while CellCept stops T- and B-cell proliferation.
So, in the words of my nurse, Tacrolimus blocks my T cells from me and my donor from messing with my new baby stem cells, needing to become bone marrow cells. The CellCept also blocks the T and B cells and she thought it helped the baby cells develop more quickly.
I feel better when I am still. I'm still trying to eat but it's harder now. I just don't want the food. My taste buds are pretty OK. Some mouth sores but not bad. I guess I felt talkative tonight.
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