Saturday, November 19, 2011

Two Years + 165 Days: On Balance -- So So

Top Line: Susan’s numbers are mostly decent, but the GVHD persists, and she’s anemic

This past Monday, Susan saw Dr. Soiffer at Dana Farber. For a change, he was the only MD on her dance card. Nice not to have had the usual hectic dashing about.

Based on the results of her lab work, Soiffer felt she was “doing good” overall. Of course, that’s his objective, numbers-driven view. Susan’s subjective, how-I-feel-driven view is less rosy (though by no means dismal), as the GVHD-inspired usual suspects (mouth, eyes, skin) continue to loiter in the vicinity. However, she’s certainly not too miserable to get out and about a bit and enjoy some of her customary pastimes (you don’t need to be told what those might be, do you?).

The one significant issue (aside from the GVHD) is that Susan is anemic, and thereon hangs a tale. Her hematocrit and hemoglobin numbers are flirting with the levels where a transfusion would be indicated. However, Dr. Soiffer believes the anemia can be ascribed in large measure to the medications she is taking for her MAC condition (mycobacterium avium complex – as you may remember from some blogs ago . . . the thing that masqueraded as tuberculosis). He’s therefore reluctant to go the transfusion route, preferring to wait and see if Susan can get off the MAC medications by, say, February (that will be Dr. Marty’s call), and if that resolves the problem.

In the meantime, the plan is to boost her blood with iron pills and diet. Chicken liver (which Susan loves in the form of chopped chicken liver, and it’s easy on her impaired eating apparatus) happens to be an especially good source of iron, and spinach is no slouch, so perhaps she can add these to the protein shakes and smoothies she’s consuming for easy-to-ingest nutrition -- think “chicken liver and spinach chocolate protein shake.” Sounds yummy.

On another front, she needs to go back to MEEI (Massuchusetts Eye and Ear Infirmary) the end of the month to provide more blood so they can make more of the special, genetically-tailored, private stock serum for her eyes. Her next regular DFCI visit is scheduled for December 19th.

1 comment:

  1. Thanks for the good news, Jerry. Best wishes to Susan.

    Bob Katz