Ray is on many meds to prevent many things. Sadly there are often undesirable side-effects to many of these meds & Ray is experiencing a few of them. It seems strange to intentionally give a med to reduce a person's immunity but they do. My understanding is that these immunosuppressive drugs are mainly used to reduce the activity of the patient's immune system to prevent rejection (attack of a donated cells thinking the donees organs are foreign - aka GVHD). The immunosuppressive drug increases the risk that you will get a serious infection. Ray's white blood cell counts had rebounded beautifully but now they are heading back down to the danger level. I suppose there is a fine line with trying to balance his immunity levels by not allowing it to be so good that it causes GVHD.
We think Ray may be experiencing GVHD of the gut now too, although the doctor has not determined that yet. Initial tests did not show it but he's having an awful lot of stomach issues that aren't letting up. Most bone marrow transplant patients experience GVHD to some extent. In fact a nurse told us she has never met a patient that escaped it. As I delve more into the subject & read the symptoms, I realize that Ray has already had a lot of them! Even though the doctor doesn't feel it's GVHD, it sure sounds like it to me. "If it looks like a duck & quacks like a duck..." This link will provide more information on it: Click here for more on GVHD
We made daily trips to the hospital the first half of this past week for Ray's daily infusions of fluid, magnesium & an antibiotic. It was decided Wednesday to reduce the visits now to just Saturday's & Wednesday's. Ray's magnesium levels aren't where they need to be because of some of the meds pulling them down so his magnesium pills he takes at home was increased. However we think that's what's causing the bathroom issues he's having. Apparently that's common. So it might not be that he's lactose intolerant after all? Geeze, if it's not one thing, it's another.
Now for a little good news! Ray's kidney levels are ok now. His appetite is returning somewhat although he does get bloated rather quickly after a meal so we'll try smaller more frequent portions. The rashes don't itch so that's a plus! He is walking more now & at a brisker pace. We are trying to get out a little more. In fact I went up to the swimming pool for a bit the other day while Ray sat in the shade doing his crossword puzzle while I swam. And yesterday I even went up to the Club House & played dominoes with some of the ladies while Ray sat at a nearby table, again with some crosswords.
Knock on wood, this Thursday they will be removing that annoying catheter from his chest & replacing it with a port that lies under his skin. They feel it's still necessary to have a port because they will still be drawing blood on a weekly basis & if they need to give him transfusions, etc. it will be much easier to simply access the implanted port instead of constantly sticking him with needles.
Ray is trying so hard to feel good. Usually when he awakes in the morning, he feels half way decent but often by afternoon he starts getting uncomfortable again. Some days he doesn't have much pain or discomfort, but then there are other days when he's not so lucky. In the meantime, we're holding on...
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