SUSAN'S HEART HISTORY 1/07/96

Susan Hattie Steinsapir

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1/7/96 (Andreas)

To fill everyone in: Susan developed cardiomyopathy (congestive heart failure) about three years ago. It's a terminal condition that takes 1-3 years. The only cure for it is a heart transplant.

In Spring 94, her condition worsened to terminal. She was accepted by the UCLA heart transplant team and placed on a list. There are many more recipients than donors. Furthermore, since one has to be rather sick to be here in the first place, it means that some 30% on the list will not survive until an donor heart is available.

A few days ago, Susan's condition worsened. Her medical report writes "...survival is on a day by day condition." She was brought to Sacramento's Kaiser ICU. I gave y'all a description of that waiting and the flight. It was quite a day.

Susan has been resting since. She's flat on her back from exhaustion and weakness, but she's in a good mood. I've gotten to know the staff here: I'm here most of the day. Susan is very confident in the ability of the staff and that makes her feel safe and protected.

The transplant surgeons have come by to look at her. They have done literally thousands of transplants. They want to wait another day or two, to manipulate Susan's condition into the right parameters, and then wait for the next organ. Susan's now at the top of the waiting list, parked here in the CCU. It could happen literally at any moment now.

Yesterday, a social worker who is carrying out an experiment came by. Susan filled out a questionnaire and then a coin was flipped: she won and that means she gets to have an aquarium in her room. It's a saltwater tank, about two feet tall, with a big yellow angelfish, a striped anglefish, a clownfish (small and orange, with a white stripe), and a zebrafish. She was very happy to win the coin toss and get the aquarium. The fish swim around and it's a pretty tank. Susan has named all the fish and she gets to feed them.

Some have asked if they could send flowers, etc. Flowers and plants aren't allowed in the CCU (bacteria, allergies, etc). What would be really nice for her would be get-well cards: any cards with cats and kittens makes her happy. Her mailing address is:

Susan Steinsapir (Patient)
4W CCU
UCLA Medical Center
10833 Le Conte Avenue
LA CA 90024
Last time, I told you that Susan would probably be up at the keyboard, so... if we get two nurses to help her up and scoot some fifteen tubes aside, (the oxygen telemetry cable is taped to her fingertip: I removed it and taped it to her big toe). Here's Susan...

Say Hey! Thanks for the outpouring of love and support. I know it saved me yesterday and in the wee small hours of Saturday. Yesterday was the worst day in my life. I almost died twice. Andreas told y'all about the first one at Kaiser. Well, it happened again at UCLA. I got queasy and started retching and the next thing I knew there were about 20 faces peering at me and the nurse, Bea, shouting my name. It's not my idea of getting peoples attention. Bea asked me later on if my chest hurt. I said, no, it feels fine. Then she told me she had hit me on the chest with all of her strength twice. I looked at her and said, "and you were thinking goddamn you, you little bitch, you just got here and you're not dying on me...". She smiled; I think I was right.

The nursing staff takes incredible pride in what they do here. They take it very personally. Moira, the day nurse, told me that they want to see their patients walk out with new hearts, healthy. They put a lot into it. The staff are all very nice and so competent its painful.

Andreas says that many of you want to get me a gift to cheer me up or some such. The only thing I want is to walk out of here healthy with a new heart. I am very aware that someone like us will have died for me to have this gift of life. The best thing anyone can do for me and the 42,000 people waiting for a transplant is to sign your donor card, indicate your decision on your drivers license and tell your doctor. Discuss your decision with your family so that they understand and they follow your wishes after death. Please, please, please drive safely and never drink and drive. Especially this week, or you might end up *very* close to me :)

Its midnight; Andreas is here and he needs to go home. I'm a bit tired. Thank you again for your love and support. I dont have words to really say about how grateful I am - we are - for your love.


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