SUSAN'S HEART HISTORY 1/25/96

Susan Hattie Steinsapir

Return to the HAVE A HEART FOR SUSAN Page.


Thursday, Jan. 25th, 1996 (Mimi Hiller) 14:00 PST

Andreas just called...he still doesn't have a modem, but that should be rectified later today or tomorrow, so you'll probably be hearing from him directly very soon.

More good news.

Susan's chest is completely closed and she continues to improve...slowly, very slowly. They're beginning to wake her up now and she should be fully conscious later tonight. They do this by reducing the amount of sedative they give her.

Andreas said she occasionally opens her eyes, looks around for a few seconds, then closes her eyes again and goes back to sleep. She's still very much out of it and is unable to focus her vision, but she will respond to certain commands like "wiggle your toes" or "squeeze my hand." She's also able to hear some of what's going on around her and responds to emotion.

Susan is still connected to all the tubes and wires, her heart is pumping well, and her internal organs are nearing full capacity of operation. Andreas said that while her toes were blue or gray before the surgery, they are now pink.

They're going to start feeding her through the tube, just a tiny bit at a time because they don't want her to get sick. Somehow I doubt she'll wake up and ask for their recipes, though.

She won't be able to talk (or complain, as Andreas said) for at least a couple more days, until they remove the tubes from her throat. Not only does she have a tube into her stomach for feeding, but they have her one working lung hooked up to another tube and they're breathing for her.

Andreas told me she has been in isolation in SICU since the surgery, and she will continue to be isolated until they discharge her in about another week. He's got a cleaning lady to vacuum and dust and clean and reclean their apartment, over and over, getting ready for that day.

I asked Andreas if there was anything he needs. His answer: 36 hours uninterrupted sleep.

It's been quite a trial for both of them, but you can hear relief and optimism in his voice. It's very consoling.

Andreas would also like to thank everyone for the hundreds of cards, letters and packages. They're piling up now, waiting for Susan to wake up and open them.

And a special thank you for all the prayers. Susan's not out of the woods yet, but she's on the right path.

Mimi Hiller


15:00 PST

I just talked to Andreas. There had been some question about all the blood that Susan received when they hadn't expected her to need any...6 pints total.

Susan Aitel had asked if there was a need to donate blood to replace what she got. Andreas said the answer is yes.

If you have wanted to do something and haven't figured out what that is...if you live far away, across the pond even...if you've wished you could be here to cook for Susan but it hasn't worked out...here's what you need to do:

Go to any branch of the Red Cross or a hospital near you and tell them you want to donate a pint to be credited to Susan Hattie Steinsapir. You don't have to be any special blood type, but you can't have had any kind of body piercing or tattooing in the last 'x' months (I think that's 6 but it might be more), and you should be healthy.

Those bloodsuckers will have you flat on your back faster than you can say "Dracula!"...they'll whisper sweet nothings in your ear (like, "Don't forget to breathe")...and when it's all done, they'll give you orange juice and doughnuts for which you'll have to demand the recipes...then hold your breath. You probably won't get the recipe, but they'll give you another doughnut.

Best of all, you'll leave knowing how many people your blood will help. It used to be the saying, one pint, one recipient. Now they divide up much of the blood donations...sometimes they only need plasma, other times, other parts.

Oh, and make them give you a Red Cross pin, which you'll wear with pride knowing you've saved a life.


(Andreas) 23:00 PST

Hattie's Update
Thursday, Jan 25th
Sorry that I've not been able to post directly for the past few days. Thanks to Kay and Mimi for writing for me. Most of Sunday, Monday, and Tuesday, I couldn't write; Susan was in such a bad condition. My modem died and today, Thursday, I got another one.

Here's a summary of this week. It's been a very long day. I'll explain in a bit why it's been a long day.

Susan was a high risk transplant. 20 years ago, she had Hodgkin's Cancer and was cured by massive radiation and chemotherapy. This MAY have led (it's uncertain) to her heart failure (cardiomyopathy). In any case, the radiotherapy left massive scar tissue on her left lung (she has practically no left lung function) and scar tissue on the pericardial sac (a tissue that envelopes the heart). She was rejected for a transplant at Stanford last year; they felt that they didn't have the experience to deal with her. The chief surgeon told us this afternoon that Susan is one of the riskiest transplants they've ever tried.

As I've wrote before, the surgery was perfect. But the scar tissue began to bleed (or rather, didn't stop bleeding) on Sunday afternoon. She had been brought up to the Surgical Intensive Care Unit (SICU). The bleeding continued and built up to such pressure that the new heart stopped. That had been foreseen and she was immediately revived.

Her chest was re-opened to relieve pressure. She was taken back to the transplant surgical theater and the team reassembled. They decided to see how things would develop.

By early Tuesday, the bleeding had stopped. Susan had gotten a number of transfusions to replace lost blood. Her chest was still open. Susan looked awful; she was more dead than alive. Since she was totally immunosuppress to avoid rejection of the heart, she was completely open to infection. Her condition was extremely critical. Many of the doctors were pessimistic; the nurses and I were optimistic and cheering for her, despite the doctors. After all, what do they know? Nothing.

By Wednesday morning, she had been stable for 24 hours and so they decided to close her chest. Susan had spent over 72 hours with an open chest.

Her color returned to her face and skin. Her toes, which had been cold and blue for the past few years due to her weak heart, were pink and warm now. She no longer looked devastated; she looked asleep. One of her nurses brought her a small teddy bear and put it in her hand; Susan's been holding it for several days now. We felt that she is going to make it. Her numbers on the monitors continued to improve, a single digit at a time, slowly, but always forward.

The new heart was on the border of right chamber heart failure. The right chamber recieves the blood from the veins, pumps it into the lungs, and then from the lungs back into the heart, where it goes to the left chambers which send it into the body. Since she only has one lung, it has a very high arterial pressure. Susan received a heart from a larger man so that she would get a stronger heart that could cope with this higher pressure. However, the right chamber was overtaxed by the lung pressure and it could barely force blood through. The right chambers were on the edge of collaspe for several days. Her doctors were ready to use a heart pump machine to take over and let the new heart relax and recover.

By Wednesday, however, the right chambers had gotten accustomed to the new workload. They had gotten exercise and had gotten stronger. By today, Thursday, the right chambers are well on the way to becoming normal.

Susan spent Wednesday resting and getting stronger by the hour.

Thursday: When I came in this morning, it was clear that she was out of the worse. Yesterday, if they tried to raise the bed for her upper body, her blood pressure would fall. Today, they could raise the bed's upper part and the heart had no problems with that. They shift her occassionally from side to side and massage her muscles; Susan rolls open her eyes. She doesn't focus or recognize things; she's still heavily sedated. I talk to her and hold her hands; her eyes move under the eyelids. By 3 pm, her nurses began to feed her: a sort of tube food that goes directly by tube into her stomach, 20 ml per hour (rfc'ers ask "what flavor?" Vanilla. Her favorite.) As I left this evening, she looks much better. Her nurses have begun to decrease her sedation to bring her slowly awake. By late Friday or Saturday, she may be awake. We'll see. The doctors have come around to seeing her optimistically; she's still critical, but making progress.

When Susan awakes, she'll think it's Sunday afternoon, the day of the transplant. She'll have lost an entire week. It'll be one long day for her.

That Sunday morning, three people recieved heart transplants. The other two are doing well. I met one of them this afternoon; he was awake Sunday night and out of bed by Tuesday. Today he went for a long walk up and down the hospital corridor. He expects to be released by Saturday. He's a funny guy: in his mid-50s. He was at home when they called him for his transplant at midnight; he lives a hour away. His wife was supposed to drive him, but she freaked out and became too nervous, so he said "move over, I'll drive." He got on the freeway and came tearing into Los Angeles at 95 to 100 miles an hour. He was hoping that he'd get pulled over by the police so that he could tell them that he was headed for his heart transplant, but, well, there's never a cop when you need one. :)

He says that he has very little pain and he feels great. I look forward hearing the same from Susan.

Tomorrow, Friday, her nurses will continue to wean her from the sedation. I'll report again tomorrow night.

As I said through Mimi, she'll continue to recieve blood transfusions. Some of you have asked if you can donate blood for her. That's a good idea. As Mimi writes, just go to your local Red Cross or hospital.

Mail for her continues to arrive. There's a big stack for her to see when she wakes up. Cards, pictures, boxes, books, and so on..., from every state in the union, from Canada, Mexico, Spain, Greece, Portugal, Taiwan, Japan, Australia, New Zealand, Kuwait, just about every major country. The nurses asked me if she's a celebrity. The New York Times has sent e-mail and may do a story about her. I had over 400 e-mails today. Susan's email is probably much greater.

I feel much better in the past two days; last night I was able to sleep without sedation, and only awoke every few hours. I even managed to noticed that it was rainy today. The rest of this week has been a blur for me.

--
yrs, andreas

back to Mimi's Food Page or return to Over the Hiller Home Page
E-mail to Mimi or JB: hiller@smartlink.net