SUSAN'S HEART HISTORY 1/13/96

Susan Hattie Steinsapir

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1/13/96 (Bill Kim)

It's 2AM PST and Andreas is completely exhausted from the events of the past two weeks and is enjoying a well-deserved rest. But before doing so, Andreas had bequeathed upon me the honor of writing tonight's update. I can only hope to accurately convey the enormity and intensity of emotions that I have witnessed in the last 24 hours. Here goes...

By the time I awoke this morning Andreas was already awake, having already taken a shower and checked e-mail. I remember thinking that this was only my third day at "this" and I'm completely worn down. I simply could not figure from where Andreas was garnering his strength to continue at this pace. Our morning preparations for the hospital were done in silence. Each of us, deep in thought, almost unaware of each other, were preparing emotionally as well as physically for the day ahead.

Our conversation en route to the hospital was typically upbeat. We discussed how the weekend has arrived and how statistics favored finding a donor for Susan due to drunk-driving and other such human-induced tragedies. We immediately admonished ourselves for engaging in such statistical schaden freude. This is the thin line Andreas and people in his situation must constantly negotiate. On one side is the compassion for the person he loves, on the other side is the callousness that can easily form in reaction to a difficult situation. I am glad to say that both Andreas and Susan are incredibly sensitive and caring people despite all that they have been through.

Upon arriving at the hospital it was immediately apparent that a great deal of new equipment had been added to Susan's room, but before I could consider what they were I was quickly ushered out of the room. It was a very tense 45 minutes before I came back and learned that Susan had been put on dialysis. Susan had suffered from near complete renal failure from early the previous day and the doctors had decided that dialysis was finally required at this point.

The results of the dialysis were quite remarkable; when I entered the room Susan was conscious, conversant and doling out witticisms left and right. Susan's blood pressure had gone from 72/35 the night before to 120/70. Amazing! It was great having Susan back. She had basically been un/semi-conscious for the previous 24 hours and here she was up and around and looking ready to raise hell :-)

Andreas and I talked her through the rest of the dialysis treatment which lasted 3 hours and withdrew 2.7 liters of fluid from her body. During this time all of us got to know Fran, the dialysis nurse, much better. She explained to us the operation of the dialysis machine which can be simply thought of as a giant coffee filter. It is really incredible the concern and effort Fran puts into every patient considering she has done this for over a decade. She treats every patient as if they were her first. I don't know how UCLA manages to find these people, but I really must credit them for assembling such a fantastic staff.

After the dialysis, Susan was wiped out -- a function of her body trying to reestablish the balance of compounds between its cells and their surroundings. I left the room after her dialysis while she went through some other procedures with the nurse and Andreas. Okay, the truth is she had to pee. But I'm only mentioning this because it is such a significant event. What this indicates is that she had regained some renal function on her own.

Shortly thereafter, Ellen, Susan's younger sister showed up. We hung out for a while until Susan had to undergo another procedure at which time we were asked to leave. I took advantage of this time to talk to Ellen about Susan's condition and catch up with some people I left behind in Seattle. When I came back Susan was resting comfortably, occasionally asking for small items (water, socks, blankets...). In between these requests Andreas and I sat and chatted idly about how glad we were that Susan was doing better and what we were going to do once Susan got her heart.

It was about this time I think I began to realize what Andreas must be experiencing. [I do not mean to minimize what Susan is going through, but all of the mail to date has not effectively addressed Andreas' involvement in this ordeal (ironically enough, this is due to the fact that it was Andreas writing all of the previous updates).] I can only describe the waiting Andreas is going through as a type of exile. Andreas, as any person in exile, is caught in a state where the present has little significance -- the present is merely a way to get to the future. However, the only future that one dreams about while in exile is one's past.

It is this strange and sad "non-time" that Andreas and Susan are both in presently. Both Andreas and Susan both want to return to a time when they were both healthy -- they want this regardless of how short a time this might be. It is both simultaneously heartbreaking and uplifting to see.

The rest of the afternoon was rather uneventful. Susan's family came and left, and I decided to take the night off and go visit some family in the area for dinner. When I came back I learned that Susan had undergone another dialysis treatment, however, this time not so positively. Susan had some type of severe reaction to one of the compounds they added to her dialysis "bath". They gave her some benadryl to mitigate her body's own reaction but then had to give her a large dose of ativan when she had a reaction to the benadryl. To hear it being described one would think that Susan was simply some beaker containing a chemical reaction that had gone out of control -- with new reagents being added in an attempt to stabilize the contents. I know the doctors are doing their best, but I sometimes want to pin them down and make sure they understand that Susan is a human being and not simply some vessel of chemical reactions to be manipulated.

Anyway, Andreas and I stayed a while to make sure Susan was asleep for the night and then drove up to Ray Bruman's place in the hills overlooking LA to drop off the keys to Andreas' Sacremento apartment and some instructions for the care of Susan and Andreas' cats. Ray normally lives in Berkeley, but had driven Andreas' and Susan's car down so Andreas could use it during his extended stay down here. Ray is going to go fly back to Sacremento to run some errands on behalf of Andreas, and then, finally, drive back to Berkeley. Susan and Andreas are truly fortunate to have friends like Ray who are willing to take time out of their lives to help.

Andreas and I finally got back to the apartment in Brentwood at about 2AM. As I mentioned before, Andreas wanted to write this update, but we finally agreed he should save his strength for Susan and that I would write it.

It has been a hectic and exhausting day. It, however, is more than the physical activity that makes it so tiring. Susan and Andreas are so in love with each other, it really is heart-rending to watch them in this situation. Andreas' devotion to Susan seems to have no limit and Susan's will-to-live is truly awe inspiring. I am just fortunate to have been allowed to share the last several days with them. The one image I will always carry from this experience is Andreas and Susan both sleeping on that narrow hospital bed -- Susan sleeping with an assortment of tubes and wires attached to her, and Andreas exhausted from a full-day at the hospital, lying next to her, cradling her. In the middle of all this chaos they had managed to find a little peace to share with each other.

So that it is it. The last 24 hours in a nutshell. I apologize for all the editorializing, it is late and I've probably said more than I should have. Hope you guys continue to write in and support Susan and the 'A'.

PS: If you are wondering who I am, Susan and Andreas call me their "illegitimate love-child". In actuality, they helped me through my chemotherapy and are good part of the reason why I'm still alive.


1/13/96 (Mimi)

This is probably less of an update than an addendum to Bill's comments of last night.

JB and I went to visit Susan last night. The plan was to spend a little time with her and take Andreas out for dinner. As much as he wants to be there for Susan, he needs to get away every so often.

We got there a few minutes after 6:00 and within 30 seconds of our arrival, Nurse Cratchett came in to tell us to leave. Actually, she said we'd have to leave in about 5 minutes. You should have seen the look on Susan's face when she said that (and you should've heard what Susan called her when the nurse left).

Well, no sooner than that was said, Susan asked to use the bedpan. That's when the nurse announced we had to leave. Well, of course...what did she think? I jumped in with, "You will let us collect our 5 minutes with Susan afterward, right?" We did, but she wasn't happy about that. Susan, who had been pissed when it was first brought up, by now was doing very badly.

She had announced when we came in that she could barely speak and that we would have to do all/most of the talking. I filled her in on the highlights of rec.food.cooking and she was adamant that the topic of her health was off-topic and didn't want to upset anyone who was concerned about straying away from the subject of food. I assured her that, though everyone was very concerned for her, no one had said a word about the little bit of discussion of her progress.

I think she was less concerned about talk of her in rfc than the discussions about the P-word and placenta recipes. But if you know Susan, you'd know she would have been right in the thick of those threads had she been around.

We made plans to go shopping after she gets out. (There's a local store that she loves, and I can't wait to take her there again.) Andreas warned that once she gets the heart, she'll run me ragged...I'll probably wear out the tread on my wheelchair tires.

We stayed a few minutes while her dialysis was being set up, then bid our farewells.

Andreas came out in the hallway with us for about 20 minutes and we talked. He apologized for Susan being so out of it (which he shouldn't have) because she was desperately in need of dialysis again.

I expressed concern over her condition and told him many of us are worried that the heart may come too late. He quickly reassured me that that was unlikely.

But, I said, how long can she go on this way?

That's when he told me all the details. They can keep Susan going for three months; as wretched as this existence is, they won't let her go. "Nobody dies in that unit." And he was completely confident of what he was saying, so I now share that confidence.

Then he went on to describe what will happen when she finally gets that heart. The first thing he pointed out is that this is a fairly simple surgery and these guys do thousands of them.

A few hours after surgery, they will have her on her feet and walking around and eating.

Here's the truly miraculous part: She's doing so badly now because all her systems are shutting down and her body is filled with toxins because her heart is only operating at something less than 25%. But with a new heart, her body will immediately begin cleansing itself. She'll be peeing like crazy, expelling all those toxins. Within three hours of surgery, he said, you can literally watch her metamorphize into a healthy person.

I wish I could be there, but at that point, Andreas will be her only permitted visitor.

Some people are worried about the fact that they will be releasing her from the hospital so soon after surgery (within a week, ususally), but this is for her own protection. She is immuno-suppressed and the safest place is away from all the germs you find in a hospital.

It's hard to imagine, but here are the facts:

The average wait for a heart (while you're in their CCU) is 3 weeks, so if averages hold true, we're almost there.

Most people are well enough to go back to work within a month of a transplant.

Because she will always be immuno-suppressed, she will never be able to work in the garden or change the cats' box (we had talked about this before, and frankly, that's the silver lining to this cloud), and she cannot risk being around sick people.

Her body will always try to reject her new heart, but with drugs, she should keep the side effects of rejection to a minimum.

In Susan's case, they'll want her to stay in L.A. for about 6 weeks. I'm even wondering if they'll let her go early. As sick as she is right now, you can tell there is a very strong spirit within her that is fighting hard to get out...it's only the heart that is stopping her. Andreas is worried that once she gets the heart, they won't be able to keep her down.

After our short talk, we left and Andreas went back to Susan to help her through the dialysis. As Bill pointed out, Susan is in excellent hands...we need to take good care of Andreas now.

Oh, despite our efforts, we never had the chance to take him out to dinner. Given the choice between his own needs and Susan's, he opted to stay with her. To know him is to love him.

Keep praying for Susan to get the heart, and for the family that must lose a loved one so she can live.


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