Another crappy day for Patty

Hi everyone:

Patty is feeling pretty poorly today. She needed to cancel a medical appointment, and slept for much of the morning. She has been coughing more often at night (which can be a side effect of ACE inhibitors or a symptom of heart failure), and her breathing seems somewhat more labored today, although not as bad as when her milrinone was reduced.

Earlier this morning, Patty was sick to her stomach, presumably as a reaction to the Cytoxan (disregard my earlier comments about it being a drug that's easily tolerated.) She was prescribed a drug yesterday to help her with her nausea, but as yet it clearly hasn't worked. What's more, so far Blue Cross Blue Shield is only agreeing to pay for 10 of these pills per month (get this -- at $45 each!) -- when Patty is supposed to have three per day. Kathy Murks at University of Chicago is pursuing BCBS to find out the rationale behind putting limits on a drug that might make Patty's life more bearable.



Patty was feeling pretty down and defeated earlier today, although I'm working hard to cheer her up and she almost always comes around. Clearly, she's frustrated with feeling poorly day-in and day-out, all in the hopes of a solution (reduced antibodies) that is by no means a sure thing. She can rarely eat because nothing sounds palatable, and what she does eat usually tastes somewhat spoiled. I did make her some tuna salad for lunch that seemed to sit okay in her stomach. It seems altogether unfair that she has all these issues on top of a potentially long wait for a heart. In spite of all of this, she is pretty strong much of the time, is beautiful always, and continues to impress me with her willingness to tough out very unpleasant circumstances. Please keep her in your thoughts.

Love,
Brian