On this afternoon's menu for me was a sizeable helping of humble pie. There really have been no major developments -- except in my understanding of Patty's situation. It turns out that I have been laboring under a fairly significant misconception this last little while. Patty did not have the same misconception. I feel a bit foolish, and I also feel more than a little distraught. I also worry that I've misled others about things, so I apologize now for any information I've offered in error. I'm hoping this time I can get the facts straight.
This afternoon, we had the opportunity to ask some questions of one of Patty's key cardiologists, Dr. Costanzo. Our conversation focused on the antibody issue and alternatives that might arise in the future. As I've reported previously, tests of Patty's blood against a sample of 100 donors yielded two results -- first, 65 percent of the sample was killed by antibodies in Patty's blood. Then, 100 percent of the sample was killed by some form of cellular reaction. I had interpreted these results to mean that Patty would be a viable candidate for 35 percent of donor hearts, and that she could anticipate some form of manageable rejection challenge regardless of what heart she received (hence, the 100 percent.) As it turns out, of the 100 hearts they tested Patty's heart against, ZERO would have been in any way viable for her -- in essence, she rejected 65 percent of the hearts on two levels! When I asked the doctor what the likelihood is of them finding a heart without successful immunosuppression, Dr. Costanzo said, "It's not impossible." So my weekend "hunch" was a bit more of a long shot than I had previously considered.
How's this, though, for an against-the-odds plot twist? Even though Patty's blood rejected 100 percent of the test sample according to that second indicator, the crossmatch did not reject the potential donor heart from last week on this second indicator. Unfortunately, the 65% issue did rule out this potential donor, but there's at least a glimmer of optimism in this, don't you think?
Our energies, then, need to be focused on how Patty's antibodies can be driven down, because that should significantly expand her potential pool of donors (in relative terms, anyway.) If the immunosuppression at 90 days shows limited or no change, doctors will consider either repeating the cycle or trying other approaches, which could include plasmapheresis or, as was offered today, total body irradiation. I asked for the likelihood of success in reducing Patty's antibodies and Dr. Costanzo said, "There's no way of predicting."
Dr. Costanzo said that she has had success keeping transplant candidates going on IV milrinone for up to two years -- so, as long as Patty's heart doesn't pull any more sudden tricks, she should have time to find a good match.
If Patty's antibodies are never reduced by chemo and/or other treatments, the odds of her finding a viable heart donor could be pretty slim, and she might later need to consider a left ventricular assist device, or LVAD, as a solution. The problem with the LVAD is that it too would further increase Patty's antibodies, so the vicious cycle would continue. As we've mentioned before, another wrinkle in all of this is that hearts transplanted in those with powerful immune systems may wear out more quickly than in others.
Doctors decided to put Patty back on the CellCept medication today; the drug had been discontinued because of blood pressure and fever concerns, but doctors feel it was more likely the IVIG than the CellCept at the root of her problems. She will receive her second dose of the IVIG after the fundraiser. She will continue these and other immunosuppressive drugs up to and beyond her transplant. As Dr. Costanzo explained, "We are shooting for accommodation more than outright tolerance with a new heart."
Well, that's it for now. Sorry for any confusion I may have caused. Please continue to have good thoughts for Patty. She's everything to me, and I'm sure she means a lot to all of you.
Love,
Brian
P.S. In spite of all of this, I did end up with a few pics, which to some extent belie the somber nature of the afternoon. These were taken before many of the questions were asked and answered.
Dr. Costanzo (perhaps the happiest, cheeriest doctor ever) and Patty (well, her head, anyway):
Patty with what she'd like for her birthday (August 5):
1 comment:
Very pretty site! Keep working. thnx!
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