I have to admit that it is harder to write an update when things are not going to so well. But I still promise that real bad news will be shared promptly, so silence, while not golden, is not really bad news.
So now, after a number of chemical attempts to reduce iron build up from transfusions, and to improve red cell production, I am now off those drugs, and feeling much better.
In fact, we are testing, with some apparent success, whether keeping me at a lower level of red cells will reduce my rate of red cell consumption. It is pretty clear that my spleen is chewing up red cells, and that this may be proportional in some way to red cell level. In addition is the quirky fact that the spleen can act as a supplemental producer of red cells.
So we are to transfuse me on a schedule that will keep me above 7.5 at all times. This is the approximate level at which I experience angina. Last week, I was down only one unit, or so, after having in the earlier phase consumed two units a week. So I go up to Hopkins once a week, and get one or two units. Well worth the effort!
As to mood, while I am less energetic at this red cell level, I am more peaceful. I think this is because when I have more red cells I feel more obligation to be productive — which I am now much more limited at. My mood is also better because I am eating more. I have gotten good advice from a GI doctor, and a drinking nutritional supplements, but most importantly, our community is opening a second dining facility that we like a lot. They do a superb cooked-to-order pizza, for example. (Menu here!)
Anyway, the absence of my blogs has caused people to worry and reach out to us — and that is a good thing. I means a lot to stay in contact. Keep doing so.
p.s., if you want to encourage me to blog more, then get people to subscribe to my blogs – listed here, at bottom.
Very best to all.