Too many cooks...

Hi everyone:

Our patient is having a terrible day so far.

Early Friday morning, Patty met with an oncologist who reviewed the current protocols for Patty's chemotherapy treatments, and made some changes based on his knowledge of, and experience with, the various drugs. On the surface, who could argue with this logic? After all, who better to determine what is best with cancer drugs than an oncology expert? Unfortunately, there seems to be some justification, with Patty, in leaving well enough alone.

Neither Patty nor I would ever profess to be an expert on these medicines, but there seems to be enough evidence that finding a tolerable mix of drugs for Patty is no small feat, so sometimes it's better to stay the course even if it doesn't seem ideal. Besides, I'm not sure how much data is out there about the needs of antibody-sensitized heart patients who resist nearly every "rescue" protocol to lower PRA. I sure haven't found much of relevance.

For Patty's previous infusion, nurses administered a shot of Demerol to relax her and to stave off symptoms of headache and nausea; I'm not certain there is a correlation, but this particular round of treatment was best tolerated by Patty. As well, Patty has been taking Zofran, an anti-nausea drug, on a daily basis, even though it is typically recommended only for a couple of days after infusions. As past blog entries illustrate, nobody has found a perfect solution, but it is one that Patty has found bearable. From watching my wife, I know that the difference between four days of nausea and two is a significant one, particularly as regards one's mental health.

This past Friday, the oncologist discontinued the Demerol, because he felt it couldn't help Patty for more than hours after an infusion (and Patty's nausea usually sets in a day or so post-infusion.) My understanding for why it was administered in the first place is that if you can convince your pain receptors not to register pain in the first place, you can sometimes avoid its later onset (please don't quote me on this.) The doctor also suggested that Patty take the Zofran only for the first two days after treatment, because in his estimation it could not be helping her days after treatment. Patty complied.

Patty has been pretty miserable for much of the time since her infusion. Yesterday, Patty did not have nausea, but she did have severe dyspnea; even as she sat watching Connor's concert, she found herself searching for a good breath. This morning, she vomited several times and is completely prone lest she stir things up again. At these moments, Patty again questions whether or not this course we have been following is ever going to yield the results she's hoping for. To be fair, she has moments where she feels well enough to almost forget she needs a new heart, but these days in which she's throwing up and sleeping for many of the daylight hours don't really feel like living to her. I don't fault the doctor, necessarily -- he was making suggestions based on his observations of many other patients. I think the difference here is that we're learning, more and more, that Patty's body just doesn't behave like that of "other patients."

Please keep your fingers crossed that Patty will rebound as the day progresses.

Love,

Brian