Home again...and on the list at last

Hi everyone:

Patty arrived home from University of Chicago Hospital yesterday evening. As of Saturday afternoon, she was officially listed as a transplant candidate, which seems like the best kind of good news amid a sea of not-so-great news. Her category is 1B, which means that she requires constant IV medication (milrinone) to be able to function outside the hospital. A classification of 1A is the highest transplant category, and is reserved for those whose condition is so advanced they cannot leave the hospital, or who require some form of mechanical assist device to survive. Our hope is that Patty will receive a transplant before her condition can deteriorate to that extent.

To prepare for her colonoscopy, which was the final test prior to being listed, Patty had to drink most of a gallon-sized bottle of a liquid called GoLytely, which she described as "salty, soapy water". You can tell she's thrilled.



Many family members visited Patty in the hospital, and even brought her oysters and sushi, which are among her favorite foods. She filled her time with conversation, movies, an occasional test and lots of sleep. On one night home, I visited friends at Kickers, a club of which Patty and I are members. It was a great comfort to be surrounded by people who are all pulling for Patty; at more than one point, I was overwhelmed by everyone's concern.

As we shared previously, Patty's wait for a donor heart may be much longer than for most people, because her antibodies would reject many hearts. To help reduce these antibodies, she has started her chemotherapy, which has proven to be an unpleasant experience. She has been running fevers and suffering through some powerful headaches. It seems unfair, really, that she is enduring this pain on top of everything else, but she's being very strong.

One of her chemo drugs, CellCept, costs $770 for a 30-day supply; thankfully, with insurance, it's only $15 out-of-pocket. I discovered yesterday that her intravenous medication, IVIG, costs about $3,000 per infusion; Patty had two infusions. It's amazing how expensive these things are -- thank God insurance is absorbing a big portion of the hit so far. Patty will undergo blood tests in a couple of weeks to see how effective the drugs have been in reducing antibodies. If they drop significantly, the pool of potential donors increases.

If you would like to visit with Patty, you have a couple of options. You can get in touch with me (omara_croft@yahoo.com) to arrange to visit at the house. Of course, Patty has good days and bad days, so you'll need to be somewhat flexible. Health permitting, Patty will be attending the fundraiser at Molly Malone's in Forest Park on July 21. For details, please contact Patty's brother Kevin at komara@ridgenet.org.

As always, thanks to everyone for everything you've done for Patty and our family. There are already so many people to whom we owe huge debts of gratitude.

Love,
Brian