Dear Friends and Family,
This is mostly medical so if it doesn't interest you, scan down.
Had our visit to the hem. today, and happily there was good news: the best is that Merwin's platelets, which had been up a couple of weeks ago, have subsided again without additional meds—as Dr. K had suspected they would. So he is in good shape.
On the other hand, my hemoglobin is down, so there was a quick rush of events: making an appointment at North Shore Hospital for Thurs. for a transfusion, the earliest they can do it after Long Island Jewish (LIJ) proved to be completely booked for the week. I sure hope the transfusion can be quicker than the 6 hrs the last (which was the first) one took. But at least I know that I need to bring books and ipod.
And the bustle proved that what Pres. Obama has said about e-records saving money. In spite of the fact that North Shore is supposedly connected to LIJ (they go by a combo of both names), because I had my first transfusion at the latter and there is no e-connection between the two systems, we had to dash over to North Shore to do the same blood tests required before a transfusion. The records were there at LIJ, but not accessible. Medicare has to pay twice.
Other med news: the shakiness I experience is prednisone related, as is the weight gain and puffiness. At least it's good to know the cause; when I stop the prednisone these symptoms will disappear.
I got the paper work for a handicapped parking permit: it'll help me when I go anywhere like the JCC. I went there today to SPIN, and my doc. was a little amazed to hear that I did that. But if I control my speed on the bike, I think it helps not only my legs but also my breathing: it forces me to take deep breaths.
The holter monitor revealed nothing to worry about. I have an occasional extra beat, but nothing like a-fib, and I can forget about it. After the hemoglobin comes up, I may no longer have the irritating beat beat be-beat in my ears. So mostly good news.
After the visit to hem and hospital, we dashed home to a lovely lunch of cheese-filled shells. And in an hour or so we will go see a movie on our "free" pass.
Yesterday was a banner day too, because we went to choose the paint for the bedroom, which is now dark paneling. At least two walls, and maybe more, will soon be mango. The big ladder is in place and all is ready to see how this color looks; I was inspired by my favorite color in Michèle and Raymond's lovely home.
And of course little bouts of work and little naps continue through each day. The prednisone seems to have me on a wakeful night, starting at about 3 a.m. Now if only it will do its work for my lungs! Until the lungs are clear, I think have no chance at all of getting into the INCYTE trial.
Love to all,
Bernice
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