E-mails From Susan, Part II

From: Andreas

Date: Saturday January 20 11:06 PM 1996

Subject: Update: Possible Heart?

It's near midnight, Saturday night. Susan's nurse just came in and said that there is a possible heart donor. The person's heart is still beating; an angiogram is being performed now: a catheter (tube) is inserted into a neck artery and a device that lets one look into the heart, somewhat like a video camera, is being used to look at the heart. It's fifty/fifty right now as to her getting this heart.
In an hour, they will make a decision. It'll be midnight. If it happens, then it'll be around six o'clock in the morning.
I'm here with the laptop at Susan's side. When the nurse told us, Susan began panting with fear. She's asking for a rabbi. I feel weak in the knees. Susan just said "isn't life odd?" I put a blanket over her to keep her warm.
Keep an eye on the time stamp for these e- mails.
Yrs,
Andreas

From: Susan

Date: Saturday January 20 11:24 1996

Subject: Uh, Uh, Uh...

From: Andreas

Date: Sunday January 21 00:15 1996

Subject: Midnight: 00:15

I'm keeping a notepad next to the table.
When the nurse told us that there was a possible heart, Susan's heart monitor jumped from her normal 112 to 120.
11:30 p.m.: Susan asked for a rabbi. The UCLA on-site minister, a Protestant, called around to find a rabbi. While waiting, Susan had to use the toilet, a portable chair toilet that is brought into the room. While she was sitting there, the rabbi called. Yes... nature called and God called. She's laughing.
11:42 p.m.: Susan wants to brush her teeth and wash her hair. With two nurses in the room, she brushes her teeth. I promise her that if there is a go on the heart, we'll wash her hair. There's her hair dryer here.
11:45 p.m.: Her nurse, a very charming, very funny Australian named Judith (that's right: the Tin Man went to Oz for a heart) came in to draw blood for the laboratory.
11:50 p.m.: Susan and I hug and hold each other. She looks forward to having a normal life again...
11:54 p.m.: Judith came in again to give Susan some morphine to calm her down. The injection went into a tube that leads into her. She sits still for a bit, and then says "whoa!" A warm, flushing feeling goes through her whole body. She slowly sinks back into her bed, with a soft smile.
00:02 I walk out of the room to answer Bill's call from Seattle. Another nurse cheerfully asks me "Is she going?" It's like getting called to win a contest. I reply that there's no final decision yet.
00:06: Susan is very dozy on the morphine. Judith came in with a cup of potassium. Susan has to drink it. Very foul tasting stuff, like chalky salty brine. She followed it with iced tomato juice.
yrs, andreas

From: Andreas

Date: Sunday January 21 01:15 1996

Subject: Hattie Update Sunday morning

00:45 am. It's a go. Judith got off the phone, looked at me with a beaming smile and gave me the thumbs up. She says "it's a go! Do you want to tell her?"
I go into the room. Susan's smiling dozing. I wake her with a kiss and say it's a go. She so zonked she says "I was just dreaming about lamb, roasted, with a yogurt marinade. and lots of garlic."
She's discussing food with a nurse right now. An hour ago, I was very tired, at the end of a long day. Right now, I'm wide awake and sweating.
yrs, andreas

From: Andreas

Date: Sunday January 21 02:35 1996

Subject: Hattie Update

01:20 am. One of the doctors from the transplant team came in. Susan has to give an informed consent, to agree to what they are going to do. He's a big fellow, unshaven, with a grin and a Tennessee accent. He looks up and says "are you a lawyer? Uh, oh..." Susan says "that's right. You better cure me or kill me, or I'll sue!"
He starts off. "We're going to perform a heart transplant. That means that we will remove your heart."
Susan says "Whoa! nobody told me about this part!"
He says "You are Number 603: the 603rd heart transplant at UCLA."
He reads through three pages of what the problems could be, so that Susan is aware of this. Zonked on morphine, how aware can she be? She keeps talking about food.
In the first 30 days, 5% will die. After that, only a few die per year.
Surgery will take about 4 to 6 hours. I can go home (but I'll have to clear out her room first, of hundreds of get-well cards, etc.) She'll sleep for about 12 hours. I should be able to see her again by Sunday evening.
When he finished, Susan said "Sounds good to me. Let's do it!" She signed the consent forms.
It's going to be a busy night at UCLA: they are doing three transplants tonight. One starts in an hour. Susan will be next and the third is after her. He is being flown up from San Diego tonight. The donors are young males. I don't know if they are from one accident or separate. Susan says "his heart will live on through me." She plans to write to his family.
Another nurse came in and put ID tags around her foot and wrist. In a few hours, they'll paint her with antiseptics and shave her front torso. Her heart monitors look great: good steady pulse, etc. She'll be wheeled down the hall to the other end of the hospital where the surgery rooms are.
Susan continues to talk about food. She's very anxious. Judith the nurse gives her yet another dose of morphine. After ten minutes, she's finally asleep. I'll be awake all night, here with her. Before they take her to surgery, I'll remove her wedding ring.
Before Susan fell asleep, I told her that when she sees the bright white light and the old man in flowing robes, be sure to ask for Monday's lottery numbers. She gave me the thumbs up. She says to play all lottery variants of her #603. I sang her one of her favorite cat songs. She's sound asleep now. I'm wide awake. It's 2:20 AM.
yrs, andreas

From: Andreas

Date: Sunday January 21 05:45 1996

Subject: Update 5 AM

5:15 AM: Two nurses came in and removed Susan's clothes and bed sheets. they shaved her and painted her with an antibacterial solution. The lights in the room are turned up: it's bright surgical lights. She asks for her sunglasses. She lays there, basted in a shiny orange color.
They give her the first of her anti-rejection pills; she'll take these for the rest of her life.
5:30 AM: Judith shows me the Surgical ICU (SICU) where Susan will be brought afterwards. It looks like sickbay from the star ship Enterprise. Outside, on the floor, sits a family, holding each other, some are weeping.
yrs, andreas

From: Andreas

Date: Sunday January 21 06:49 1996

Subject: Update: 6 AM

6:10 AM: The anesthesia people come in and tell Susan what may happen. More informed consent. Death, brain damage, etc. By this time, Susan has had so much morphine that she smiles and says "sure, whatever..."
6:30 AM: Everything is ready. All the forms are signed; the team is getting ready. We wait.
The nurses and doctors whom Susan has gotten to know over the past two weeks drop by, to say hello and wish her luck. Susan is napping. I'll walk with her to the surgical theater in the basement.
Afterwards, it's home to sleep. They'll call me sometime this Sunday afternoon. It looks like a beautiful day in Los Angeles. I'm crashed from emotion and exhaustion. I'll post when I hear something.
yrs, andreas

From: Kay Hartman

Date: Sunday January 21 08:15

Subject: Phone call from Andreas

I just received a phone call from Andreas. He called to say that it's happening. Surgery started at 8:00 this morning PST. Now we just wait to celebrate Susan's new birthday. Andreas said he will be posting as he hears more.
I have to say that Andreas sounded very excited. He was out of breath. He said he was exhausted. I said he would never be able to sleep. He told me that he took something to help calm him down. Hopefully he will be able to get some much needed rest before Susan wakes up from the operation.
I'm sure that all of you are thinking of Susan. She has not left my mind all morning. Take care, all.
Kay

From: Kay Hartman

Date: Sunday January 21 15:23 1996

Subject: My Own Hattie Update: Sunday 21st Jan

Sunday afternoon 3:23 p.m.
I just talked to a very physically and emotionally exhausted Andreas. The surgery is over. It was a success! The quote Andreas gave me from the thoracic-cardiac surgeon is that the operation "went extremely well."
Susan is currently being moved from surgery to Surgical ICU (SICU). She is still unconscious. She should be waking up around midnight tonight. Andreas will be there when that happens. Andreas thinks she will wake up ravenous. I'm not convinced. She will be on IV for two days.
Susan still has all sorts of tubes going in through her mouth. (Is that right? Andreas made me take notes but maybe I could have done a better job of that.) The tubes are helping her breathe. The tubes will come out in about 9 hours.
Andreas says that Susan will be running all of us ragged now. He said it will be like she got a change of batteries. I look forward to a day in the near future when I can say to Susan, "Slow down. I can't keep up. You're going too fast."
OK. We can all breathe now.
Kay

From: Kay Hartman

Date: Sunday January 21 18:24 1996

Subject: My Own Hattie Update: Sunday 12 Jan

Andreas just called me with the latest news at the hospital. Here's what is happening.
Before I start this story, let me say that everything will be OK.
Susan is in the SICU. She began suffering a lot of internal bleeding. She developed a blood clot. The clot caused too much pressure for the heart and the heart stopped. This was foreseen by the medical staff. Her chest has been reopened. The bleeding is coming from tissue scarring from her previous cancer treatment. In 10 minutes they are taking Susan back to surgery. They will raise up the heart and clean her up. She will be in surgery for about an hour.
Susan was briefly awake. She looks healthy. The staff says that she is in good condition. The doctors also say that she received an excellent heart.
Andreas says he will call me with a new report when Susan is out of surgery. I will re-post then.
Don't let down your guard. Keep your thoughts going in Susan and Andreas' direction. The battle sounds like it is not over.
Kay

From: Kay Hartman

Date: Sunday January 21 21:20 1996

Subject: Later Sunday 21 Jan

I just received another call from Andreas. I can't tell you enough how tired the poor man sounds. I wish there was something that could be done for him. As he told me, the only thing he wants now is for them to tell him that it's all over and everything is going to be OK.
Susan is out of surgery. She is stable. Andreas is going to be allowed to see her in about a half hour. Personally, I'm glad he can go in. The thought of them being separated tears me to pieces.
Have a good night. Keep sending all of those positive thoughts to UCLA medical center.
Kay

From: Bill Kim

Date: Sunday January 21 23:51 1996

Subject: Update

A second report, sent from Bill's laptop.
Yrs,
Andreas
05 PM: Susan came up from surgery and is in the Surgical Intensive Care Unit (SICU) where transplantees are held.
Susan's chest has began bleeding. Due to the radiotherapy for her Hodgkin's cancer 20 years ago, the left lung is mostly scar tissue. The pericardial sac, which is a membrane around the heart, was also scarred. This made the chest a difficult area into which to place the heart.
Susan began bleeding and the chest filled up, which put pressure on the heart. The new heart stopped beating. The team had expected that and she was revived right away. Her chest was then reopened so that they could have access to the sites which are bleeding and to reduce pressure. She was taken back to surgery, where the transplant team examined her closely, especially the area under the new heart.
I waited outside until 7 PM, when her family came and took me to dinner. We ate and returned.
9 PM: Her condition is sufficiently stable that I was allowed to enter. I wash my hands and put on surgical gloves, mask, and cap. The SICU is far more advanced than CCU. These folks really like technology. I'll bring my camera tomorrow and take photos so that you can see.
Susan is on a surgical bed, a large flat bed. She is completely unconscious. Her hands and feet are restrained. A small doughnut, the size of a Frisbee, is a pillow to hold her head still. A single sheet covers her. Four doctors and nurses watch her constantly.
I held her hand and talked to her but she is unconscious. I held her and talked to her anyway. She looks a mess: tubes lead in and out of her mouth and nose; a number of tubes into every available artery, including tubes for urine. Her nurse told me that I could look under the sheet if I liked. I carefully lifted the sheet. Her chest is open. A sheet of clear adhesive plastic, like Saran Wrap, covers her chest and seals it. A plastic tube, as thick and as large as a finger, holds the sides of the sternum apart. Inside her chest, her new heart is beating strongly. More tubes lead away from the chest with suction to remove blood. Her toes are a good pink color, which means that the heart is moving blood well through the lungs and her body is getting a good supply of oxygen. Her kidneys are working strongly.
Susan is extremely critical. She has only barely made it off of the surgical table. They will keep her chest open all day Monday and most of Tuesday. If the bleeding stops, then they will began to close her chest slowly, a centimeter at a time. If upon reaching the final centimeter her bleeding stopped, then they will close her chest. She is on several powerful sedatives and pain suppressers. She won't remember any of this. By early Wednesday, she will began to wake up.
The heart transplant teams knew about her lungs before they started. They were aware of the possible problems. They've dealt with this sort of complication before and they feel confident that she will recover. It will be slow and critical, but Susan's in great condition, young (40), and has a strong will to live.
I covered her up, tucked in the sheet around her neck, and brushed her hair out of her face. I walked out of the hospital in shock and began weeping in the car and couldn't stop until I got home and sat here for a while. She's a very sick little kitten and I love her very much. I keep her wedding ring with me.
It's Sunday night. I don't know if I'll be able to sleep tonight.
Monday, Noon. Bill from Seattle is here again. We went to see Susan. She's stable; the bleeding has stopped. She's still in a very critical condition. Her chest is still open. By late Tuesday, they may began to close. She reacted briefly to a nurse's command to squeeze her fingers and flex her toes. She's still heavily sedated. I slept, but only with sedation.
Yrs, Andreas

From: Kay Hartman

Date: Sunday Monday 22 20:45 1996

Subject: My Own Hattie Update: Monday 21 Jan

Andreas called this evening at about 6:30. He spoke with Jack. Since I usually do not arrive home from work until 8:00 I am working from Jack's usually sparse notes. Jack wrote a list of things from the conversation. I will report those now. I cannot embellish because I was not part of the conversation. Here is what we have.
Yesterday Susan used 5 units of blood. Her numbers are improving today however. Because her chest is still open the chance of infection is possible. They are planning to close the chest tomorrow. She currently has 32 tubes in and out of her body.
Her heart stopped yesterday. This is not an unusual situation. I am guessing at this point that this is the same heart stoppage that happened before her second surgery yesterday. I will try to find out for sure next time I talk to Andreas. I will report again if I find out that I am wrong.
Of course we are all still pulling for Susan and Andreas. I know that they are in my thoughts all day each day during this trial.
Kay

From: Kay Hartman

Date: Tuesday 23 19:21 1996

Subject: My Own Hattie Update

Today at about 2:00 in the afternoon Jack talked to Andreas. At about 6:30 this evening I talked to Susan's sister Ellen. Here's what we heard from our two conversations.
Basically, as near as Jack and I can tell, not very much has changed since yesterday. According to Ellen (whose comments are easier for me to relate since I talked to her directly), Susan is still in critical but stable condition. Susan's chest is still open. They are going to look into closing it tomorrow. I told Ellen that I thought Susan's chest was to be closed today. She said that Susan is just not stable enough yet to close the chest. Ellen did say that the bleeding is greatly reduced. Then Ellen proceeded to tell me not to worry. I found this ironic. First of all, it seems that I should be telling this to her. Second of all, how can any of us not?
Kay

From: Mimi Hiller

Date: Wednesday 23 14:46 1996

Subject: Tiny Update

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 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.
Mimi Hiller

From: Mimi Hiller

Date: Thursday 25 10:06 1996

Subject: Hattie Update

It's 10 am. Andreas just called to tell me what's going on. He would have written himself, but his modem is shot (he's getting another one later, so he'll be back online soon).
The news is good. Susan is stabilizing and they're going to be closing her today.
The procedure is a bit fuzzy but I'll do my best to describe it from what Andreas said. The incision is about 3 inches long and being held open. There is tape across this which will be pulled shut a half inch at a time. Each time they pull it, they will leave it for a while and observe to make sure she is still doing well. This should take several hours. When she is finally closed, they will staple the sternum together and sew her up.
Susan should be awake later today, probably this evening. She has been lying flat on her back on a surgical table for 72 hours and they're going to want to get her moving as soon as possible, so she'll probably be sitting up before the day is out. And she'll most likely be eating within 24 hours. (I took that as a cue... just let me know and I'll be down there with food. Hardly worth waking up after all that and have hospital food shoved in your face... right?)
Altogether she's gotten 6 pints of blood, but as I said, she's doing better. Andreas said her color was horrifying the first day, a kind of pasty look, gray and frightening. Her color today is much better.
Also, they were toying with the idea of dialysis again, but opted to give her more time, and it paid off. Her kidneys appear to be functioning at about 80%, which is significantly better than before. In fact, everything seems to be moving in the right direction. She was very high risk for this surgery, but I doubt she could have gotten better care anywhere else.
In a prior update, Andreas told us about a total of three hearts. Lest we think that this is only about Susan, the news is very good for the other two recipients. They are doing very well, both of them, and are up and walking around.
As for Susan, they will still try to have her out of the hospital in 6 or 7 days because of the risk of infection. Andreas is getting the apartment ready for her.
Time to start thinking about cooking for Susan again. It does a Jewish mother's heart good. Literally.
Mimi Hiller

From: Mimi Hiller

Date: Thursday 25 21:18 1996

Subject: Hattie Update

Thursday evening.
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

From: Andreas

Date: Thursday 25 23:18 1996

Subject: Online again

Thursday
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 (congestive heart failure or 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 immunosuppressed 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 receives 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 collapse 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 occasionally 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 p.m., 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 received 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 and get a siren escort, 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 receive 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 e-mail 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

From: Andreas

Date: Friday January 26 22:42 1996

Subject: Hattie Update

Friday, 26th Jan.
A short update today: Susan continues to improve, hour by hour. She's still heavily sedated: when I say her name, talk to her, or take her hand, she opens her eyes and looks at me, but they slowly close again. The little statute of Capt. Picard is above her bed: her heart surgeon looked at it and said to me "he's had two hearts, you know."
I sat there most of the day, chatting with her nurses, who are very funny people; they look at clothes catalogs, gossip, tell jokes and pass the time, watching Susan. With all the staff and technology, she's the Million Dollar Woman. I've been re- reading Walker Percy's The Moviegoer.
Susan continues to get mail and her nurses ask me if she's a celebrity or what. I told them about the net and all of you. Her nurses told me to say hello to everyone.
Last night, perhaps from so much stress, I had back muscle spasms; I limped into the ICU this morning and told the nurses that I needed a bed as well. By this evening, I can walk again.
One of the nurses gave me a printout of Susan's EKG, the heartbeat line from the monitor and showed me something interesting. It shows a big jump and then several small waves. In between, there's a tiny jump that called a P- wave. Susan has two: one is her body's signal to the heart and the second is the new heart's signal. The first squiggle is the ghost of her first heart to which her new heart replies. I'll scan it and put it on the web site in a few days.
yrs, andreas

From: Bill Kim

Date: Sunday January 28 23:03 1996

Subject: Sunday Afternoon Update

Andreas asked me to post the following update:
Things are extremely critical.
Susan has been put on full mechanical support -- the only thing keeping her alive at this point. Andreas will be meeting with the family and doctors for a 3 PM conference in which they will decide what to do. Andreas has not given up, however. He has told me that as long as there is high-level brain activity he will demand they continue treating her.
Do not give up on Susan. Susan and Andreas need your support and positive thoughts now more than ever.

From: Mimi Hiller

Date: Sunday January 28, 1996 1:25 PM

Subject: A Turn for the Worse

I'm sad to report that Susan has taken a turn for the worse.
After not hearing anything from Andreas in almost 2 days, I called him. He and Susan's sister are waiting for Susan to come out of surgery (again).
It's unclear what went wrong, but apparently her right heart failed. They are now pumping her blood by machine.
There really isn't much else to report. She's been in surgery a couple of hours now; Andreas promised to call again in about 2 more hours.
I sure hate to ask this, but if you could pray double time for her, it would help... how about every time a Budweiser commercial airs during Super Bowl, you put in a word for her.
The doctors aren't giving up on her... we can't either.
Mimi

From: Mimi Hiller

Date: Sunday January 28 21:04 1996

Subject: Hattie Update

I just talked to Andreas again. Susan is extremely critical.
They operated on Susan twice today. Basically, she's bleeding from everywhere in her chest and because of the medications she must receive to keep from clotting, there's no way to stop it. She's now receiving 15 units of blood every 2 hours. (To put that in perspective, your body only contains 7 units.)
Her heart is beating, but not pumping blood, so that is being done by machine. One lung was shut down prior to the transplant due to the radiation therapy she had 20 years ago; the other lung is not functioning now, so her breathing is being done by machine.
She's on complete life support, including 24- hour dialysis. The doctors say that they hope the assistance will allow the heart to rest so that it can resume normal activity.
Tomorrow they will reduce her sedative and wake her up long enough to measure brain activity. If there is sufficient activity, she can be kept alive another week or two in the hope that she will recover. In any case, a decision will be made tomorrow about how to proceed.
Susan's family is at the hospital; Andreas' family is on their way.
Further updates will be posted as information is made available.
Mimi Hiller

From: Andreas

Date: Sunday January 28 23:40 1996

Subject: Sunday Night

I'm very sorry to say that Susan is doing very poorly. Yesterday, Saturday, she held my hand and looked at me. I expected that today she'd be able to get the tubes out of her throat. She had been progressing very well the last four days.
This morning, her heart collapsed because of the high pressures in her lung. She began massive internal bleeding. She was resuscitated several times. Her chest was reopened, to relieve the pressure and to remove blood. She has been given continuous transfusions all day. The blood comes in and goes out.
At 3 PM, her chest was opened yet again. It was a pool of blood. They're looking for places to seal to stop the bleeding. She's developed an infection in her lung. Her kidneys have failed completely. Her body is retaining blood to her torso; her feet and hands have no pulse and are cold and blue.
Tonight, at 10 PM, she'll be reopened again. Her whole family is here; my parents are coming tomorrow; Bill and Kelly flew down from Seattle.
Susan's sedation has been stopped. After 12 hours (to clear the sedation from her system), she'll be tested for neurological response. An EEG test will determine her brain activity. If there is any response, her doctors will maintain her on support until the heart has a chance to recover. She's too weak for another transplant. If there is brain damage, well...
Susan and I talked about this several times in the past year. She doesn't want to live with brain damage.
I've held her hand and talked to her and caressed her face and kissed her. The poor girl. I'm so scared. I love her very much. Please pray for her.
yrs, andreas

From: Susan Hattie Steinsapir

Date: Monday January 29 12:59 1996

Subject: Susan Hattie Steinsapir

Dear Everyone,
I send this from Susan's e-mail account. It's Monday, the 29th of January, 1996. This morning, the neurologists examined Susan. They found no evidence of neurological function. Her brain has died.
Susan has died.
My parents arrive soon, her brother Stephen as well. Her brother Kenneth, her sister Ellen, her mother Janet, and my friend Bill and Kelly are here.
I placed her wedding ring on her hand, kissed her, and washed her face. We'll remove the tubes from her mouth and wash her face. Then we'll turn off the machines.
She loved everyone on rec.food.cooking, the transplant list, the cookie jar. She enjoyed so much using the net to talk with her friends around the world. She wanted me to say good-bye for her to all of you.
She is dying without pain. She looks so lovely.
Please find the person you love and kiss them and let them know how much you love them and appreciate them. Someday, you'll miss them so much. And your cats, and, well, dogs too.
Good bye from Susan, Andreas, and the cats: Willie, Dash, Theia, Sephy, and Orion.
Yours, Andreas

From: Andreas

Date: Monday January 29 22:13 1996

Subject: Susan's Funeral and Wake...

On Tuesday, we drive back to Sacramento.
On Wednesday, 2 PM, Susan will be buried in the Jewish cemetery in Sacramento. I don't have the address yet: I'll post it tomorrow. Or, call my home phone Tuesday after 6 pm Pacific time for directions. You're invited. Casual attire (it's California) but no T-shirts, please.
On Saturday, 2 P.M. PST, we'll have a wake at our place. rfc'ers bring their favorite foods. Ray is organizing this. Let's try to make it a happy bon voyage. Again, call my machine for directions. I'll also send a note and a map at my web site. Ray and others are organizing car pools from the Bay Area.
If you want to make a donation, please donate to your local society for cats. Or, Joann Van Arsdale (sorry, no e-mail), a vet and close friend of Susan, is setting up a perpetual trust fund in Susan's name for lost and abandoned cats. Send to me and I'll forward to her.
yrs, andreas

From: Anne Bourget

Date: Tuesday 30 January 11:301996

Subject: Susan's Obituary

Susan's Obituary appeared in today's, Tuesday, January 30, 1996, in the Sacramento Bee newspaper, as follows:

SUSAN HATTIE STEINSAPIR
Born 2-26-55. Died 1-29-96. Graduate of C. K. McClatchy High School, Sacramento City College, University of California Davis, and McGeorge School of Law. She practiced Elder Law. She is survived by her husband Andreas Ramos, mother Janet, siblings, Kenneth, Ellen, Steven; cats, Willie and Dash and many loving friends. Preceded in death by her father Leon J. Steinsapir, MD Her family thanks Kaiser South Sacramento and UCLA for her heart transplant.
Funeral: Home of Peace, 6200 Stockton Blvd., Wednesday, January 31st, at 2 p.m.

Anne Bourget

From: Andreas

Date: Thursday February 1 01:10 1996

Subject: Hattie's Funeral and A Susan Story...

Dear Andreas,
I know you've had about a million messages, and probably won't get to read mine... but my heart aches for you. I miss her and I didn't even know her. I feel sad, and I don't know what to do. I am so sorry.
Love,
Catherine

Dear Catherine,
I read every single one. And cry over nearly every one. Thank you very much for writing.
Last night, after all of the families arrived in Sacramento, several of us began to tell the others (non-net) family about all of you on the net. They asked me if they could see these messages. I set up my laptop and our families crowded around and began to read the messages, silently paging down. Soon, everyone was crying again. There are so many beautiful and sad messages, of people weeping in New Zealand, of people writing from Canada, of people saddened in England... our pain and sorrow is shared by so many.
I've cried since Sunday. I can't believe the sense of loss of my wife, my best friend, and my buddy. Me and Susan had a great time together.
So maybe I'll tell you about her funeral. It's made me feel better; I still feel the sense of loss, but I've also gotten so much from others. So many of you are grieving so it'll help the sorrow a bit to hear that Susan had a nice burial.
On a Wednesday, at 2 p.m., in light rain, we held her funeral. It's a small Jewish cemetery, right across the street from one of Susan's favorite Vietnamese restaurants. 102 people signed the guest book. We could have opened a university: there were lawyers, doctors, professors, engineers, computer people, politicians, writers, and so many other people. Dan Flynn (who Susan met only a few months ago via the net in a discussion about Sacramento restaurants) found a friend at the city newspaper who interviewed Ellen (Susan's sister) and wrote an article with a photo that appeared in the papers this morning. It talked about how Susan had touched so many on the net. Many of Susan's legal colleagues and others came because of the article. Thanks, Dan.
Susan was dressed in a simple but beautiful dress, along with a favorite necklace. She went in style: she wore her favorite sparkling, bejeweled shoes. I included photos of her cats, wedding photos of us, small personal mementos, and her favorite Henckels chef's knife.
Susan's closed casket was a pale pink; we placed a portrait of her beside it and a lit candle. There were a number of floral sets.
The service was led by a cantor who sang several songs and spoke: he reminded us that we should ask ourselves "what did Susan teach us? What did we teach her?"
Several family members gave short eulogies; Mo Miller read a longer version of her e-mail that she posted here the other day. I printed several poems that many of you have sent and some of these were read: Cris Derrick's poem and Michelle Campbell's poems were read. Ken (Susan's brother) read Vicki Braun's "Death in Cyberspace" posting. Other family and friends talked and remembered Susan.
Afterwards, six pallbearers carried Susan to her resting place. They were: My father, Bill Kim (my brother in spirit and close friend to us), Ray Bruman (a close friend to both Susan and I), Maureen Miller (who wrote the above e- mail about Susan), Deborah Behrens (a close friend and colleague), Anne Bourget (a close friend to both Susan and I).
Well, traditionally, it should be six men, but all of you know about Susan and her regard for tradition.
Susan's favorite newsgroup, rfc, was represented by both Ray Bruman and Anne Bourget.
We followed behind them. I carried a portrait of Susan and walked with Ellen, her sister. We placed the portrait along with several flowers atop the casket. I touched her casket and kissed it good-bye. After a chant in Hebrew, she was lowered. We took turns scattering dirt onto her casket.
Afterwards, many of us went to her mother's home. There was some food. I've lost my appetite since all of this happened and I only ate a few strawberries. But it was so nice to meet so many of our friends. I went around and around the house, welcoming people, introducing people to each other, and talking with people. Many were telling Susan stories: Susan's wit, audacity, and boldness made her a loose cannon in this tired world. I'll try to collect some of these stories and post them here for you.
People cried and people laughed. Everyone talked so openly. So much love and emotion between everyone and so many hugged me and talked with me; Susan brought so many people together. I felt both very sad and very happy, to see how people loved Susan and many told me what Susan had said to them about me. She loved me so much.
On Saturday, Feb. 3rd, 2 PM Pacific Time, we're holding a wake at our home. It should be a happy wake. If it's like the reception, we're going to have a great time. Susan would be so happy to see us happy. Ray and Mo and others told me that people were sending regrets from New Zealand that they couldn't come to Susan's wake. So... why not a cyberwake? Since we have friends around the globe and in all 24 time zones, let's declare Saturday, the 3rd of January, to be Susan Hattie Steinsapir's Wake. You can get together with others in your city and tell your favorite Susan stories and have something tasty to eat, and post to rec.food.cooking (which is widely distributed). I'll try to collect more Susan stories and post them.
I'll start by telling a Susan Story...
Susan loves cats. She rounds up lost kittens and drops them off with friends "just for the weekend" which usually turns out to be forever. Her mother had Laila, a 23-year old Siamese, who was a beautiful lady cat. Susan had known Laila forever.
One day, her mother called late at night and began talking about odd things. Susan interrupted and said "tell me why you're calling." So her mother said that Laila had died. Susan asked what happened to the body. Her mother said that she had tossed her into the garbage. Susan slammed down the phone. We talked about it, dressed in black, and at 2 am, snuck into her yard to look for Laila. We found her in the garbage, took her home, and cleaned her up.
We figured we'd bury her under her mother's rose bushes that coming weekend when she'd be out of town. Since it was summer and very warm, we curled up the poor girl, put her in a plastic bag, and put her in the freezer. Susan went over and looked at the rosebushes to pick out the one. But her mother stayed in town for the weekend. And the next. And the next.
Well, Laila was in our freezer for about six months. Friends would ask "what kind of cats do you have?" and Susan would say five live ones and one popsicle cat.
Our Japanese housekeeper opened the freezer one day, looked, and shouted "what that?!?" Susan said it's Laila. She shouted "but Laila dead!" The housekeeper couldn't figure out how Laila should show up several months later in our freezer.
So finally, her mother asked Susan's opinion as to whether she should go on a cruise. Great! Susan urged her mother to go on the cruise just so we could bury Laila. So she left and we thawed out Laila.
We went over and while Susan directed, I spread newspapers around so there wouldn't be any tracks and carefully dug up a rose bush and dug down very deep. Susan gave a short talk about Laila's life, sprinkled at least half a bag of Laila's favorite cat food on her, stripped the rose bushes and added flowers. Laila looked so happy. We covered her up and removed all the evidence.
Several weeks later, the Japanese woman walked into the living room and said to Susan "where Laila? She no in freezer. Maybe you eat her?" Susan told her that we buried her. But we wouldn't tell her where we buried Laila so that her mother wouldn't find out.
Our housekeeper spent Tuesdays at our place and Wednesdays at Susan's mother's place. So of course she talked. One day, we're at her mother's place and she finally says "What's this that I hear that you buried Laila in my garden?" Her mother asked if we really kept Laila for six months in our freezer, along with the venison and ice cubes. Susan denied everything.
Her mother still walks around the garden, trying to figure out where we buried Laila.
Now that's a Susan Story: it makes me cry and laugh. What a girl. I hope you've laughed too and makes you feel a bit better.
yrs, andreas

• Go to Part III.