Thursday, November 30, 2006

From answers, more questions

Hi everyone:

Well, we predicted no surprises at the hospital today, and there really weren't any...we guess. To be honest, I seem to be wading my way through this sea in a near-constant state of confusion. Almost every day, I pore through online medical reports, in the hope I'll finally have that "aha!" moment in which this whole experience will at last make complete sense. Instead, it seems that each new day brings with it a few seeds of understanding amid crops of confusion.

By all accounts, Patty's right-heart catheterization was a complete success. In fact, the various pressures that are measured as part of this process were normal -- not "heart patient" normal, but normal. Guess where my mind and spirit went with this? I ventured: "I know this is probably a stupid question, but if her heart is behaving so well, why do we need to replace it?"

Dr. Costanzo explained that the main thing these numbers told her was that, aside from the antibodies problem (which continues to be a HUGE problem), Patty continues to be an ideal heart transplant candidate. However, her heart is still, for lack of a better word, dying. Ultimately, it will not continue to have the ability to pump enough blood to meet her body's needs. So, we still need to get our patient to the point where her antibodies will accept a new heart.

A few plans are in the works, and a few are still being discussed. Right now, we know that Dr. Costanzo plans to reduce Patty's continuous milrinone infusion by half, starting early next week. As a test, the doctor discontinued the flow of milrinone briefly during the catheterization, and Patty's pressures remained constant. She explained that since milrinone quickly dissipates when the flow is interrupted, the lack of negative symptoms suggests that perhaps Patty is realizing some longer-term benefits that sometimes occur after patients have been on the drug for some time. Having said this, we observed quite a different effect about 12 hours after her milrinone dose was last reduced, during a stay at University of Chicago Hospital. So, we're curious, but nervous.

The big question both Patty and I shared was, "If milrinone helps, why reduce it?" Dr. Costanzo explained that she wanted to give Patty a bit of a "holiday" from the headaches associated with the drug (it expands blood vessels, which tends to make one more prone to headache.) As well, milrinone, for all its many selling points, isn't always entirely benign in its effects on the heart.

We have speculated that the subtext here is that the doctors want to shift some of the focus toward decreasing discomfort as much as possible, because the wait for a heart may be a lengthy one. We also speculated that doctors may be wanting to give Patty a short break from the nastier aspects of her therapy, so that she's better equipped both physically and mentally for the next series of options. Patty offered that perhaps this is about doctors conceding, at least to a degree, that quality of life may now be a more realistic goal than quantity; I'm not sure I agree. To be honest, I'm just more confused tonight than I was this morning, and I don't feel any closer to becoming a knight in shining armor for Patty.


1 comment:

Cari Lackey said...

Hi All,
Patty looks really good in this picture.