Visit to UCH

Hi everyone:

Patty and I made the trek to University of Chicago Hospital today for Patty's routine check-up with her cardiologist, Dr. Savitri Fedson (with Patty, left.) "Dr. Savvy" is fun, friendly and looks like she's about 20 years old. Patty could not be happier with her doctors -- except perhaps if she had the option to never see them again.

As part of our discussions, we learned that Patty has been crossmatched against two hearts, neither of which was a good option. Dr. Fedson agreed that it would be a really long shot at this point to find a negative crossmatch (or, in other words, an ideal heart candidate.)

If I'm understanding correctly, after 90 days, if Patty's PRA (panel reactive antibodies) have not declined, the plan would then be to transplant her against crossmatch. This would mean that Patty would be transplanted with a heart of the same blood type, but not tested for its reaction to antibodies. This is a far-from-ideal situation, in part because they will need to watch Patty much more closely (and frequently) to watch for rejection episodes. In addition, she will likely need greater amounts of some pretty unpleasant anti-rejection drugs. On the plus side, however, Patty would likely not wait very long to receive a donor heart. Let's all still keep our fingers crossed for a reduction in antibodies.

Patty's blood was drawn today to test her PRA again, and to make sure there is a sufficient supply for future crossmatching. Although the results will be shared with us, Dr. Fedson cautioned that she does not expect the levels to have changed as yet.

We were told that if Patty's heart undergoes another significant decline, she will most likely require a balloon pump to keep her going until a heart would become available. That need would also mean that the timetable for transplant would need to be accelerated, regardless of crossmatch issues. A left ventricular assist device, or LVAD, is another possible option, although Patty would need an external LVAD because of her size. Dr. Fedson assured us that they would do everything possible to avoid an LVAD placement. When I asked, "Is this because Patty's antibodies would increase?" Dr. Fedson smiled wryly and said, "I don't really think Patty's antibodies could get much higher."

Patty is very much looking forward to the fundraiser this Friday night. Of course, she has planned her outfit and her jewelry, has made arrangements for a manicure and pedicure, and is trying to decide when to color her hair. Of course, I've done no such planning. We had a chance to look at the list of auction/raffle items and the list of attendees and were, quite simply, blown away. Clearly, Patty's siblings have gone all-out to make this evening a success, and we cannot thank them enough.

Here are some other pictures from her trip:

Patty with the transplant team social worker, Rina Murao



Patty with Nurse Roz



More soon...

Love,
Brian