E-mails From Susan, Part I
January 4 10:50 1996
Subject: Welcome to Hattie's Heart
Welcome to Hattie's Support List
Thanks for asking to join.
You've been added to the list. We'll try to post daily news to this
Susan has a laptop with modem at her bed in the ICU; she dozes
for a while, wakes up, and checks her e-mail. She prefers the laptop over
her TV; she's never been much for watching TV (tho' she watches Startrek:
Next Generation like clockwork) (Capt. Jean-Luc Picard of the starship
Enterprise himself has a second artificial heart.)
And I'd like to
thank each one of you personally for your support for Susan. She's in good
spirits and she'll do her best to get back to the kitchen. A new heart
will also let her get out and start checking out many more
Date: Thursday January 4 23:45 1996
Subject: Free Willie!
was told by her doctors that today, she'd be taken to LA for a heart
transplant. Susan wanted to see Willie, her big red cat, before she left.
We thought about whether we could convince the ambulance that was to take
her to the airport to stop at home for a cat visit. Susan said that she
had a better idea: I was to bring him into the second floor ICU.
quietly asked her head nurse if I could bring a cat into ICU. Of course
not. No way. It's not permitted. Against the rules. Somebody would be
fired. Therefore Willie has to be smuggled in.
I looked out of Susan's
window. She's on the second floor at the corner of the building. The
window opens. Piece of cake: put Willie in a cat carrier, drop a rope with
a hook, and pull Willie up.
I went home, picked up Willie, and drove
back to the hospital. It was night by now. We decided to make the rope
trick into Plan B. For Plan A, we'd just walk into the hospital with him.
Maybe nobody would notice. Yeah, right.
Willie had been quiet up to
now. We entered through the Emergency Department, because the doctors and
nurses are usually behind a partition. It was a busy night: lots of
people. Willie was bundled up in a pink blanket to look like a baby. That
worked until he gave a loud yowl and people jumped! That was a very sick
baby! We almost burst out laughing and started to run for the staircase.
At three steps at a time, we ran up the stairwell and walked quickly into
ICU. As we walked past all the nurses and doctors in the center space,
Willie gave another yowl. We got into Susan's room and shut the
Susan was very happy to see Willie. He got up on the bed and laid
next to her. After a while, a nurse knocked on the door. We threw a
blanket over Willie and she came in. She knew we had a cat in there. She
thought it was funny and wanted to see Willie. From then on, when she came
into the room, the password was "meow."
After an hour or so, Willie and
I left. All the nurses wanted to see Willie.
Moral: Where there's a
Willie, there's a way!
Date: Saturday January 6 09:55 1996
5th January. Friday morning. Susan had been told that
we probably leave for LA by 10 am Friday. But there wasn't an available
bed at the UCLA. We would have to wait until a bed became free.
sat. Susan looked at e-mail and I packed up her hospital room. I had
brought our baggage and left it in the trunk of the car. At 11 am, Susan
began napping. Still no bed at UCLA. We waited hour by hour. Normally,
visitors are only allowed ten minutes. This is a bit of a flexible rule:
the nurses use it to throw people out. They have to watch two patients
each, so they appreciate those who take over much of the work: I feed
Susan (but that means mostly listening to her complain about the hospital
food), help her to the bathroom, fetch this and that, bring her water,
cover her up, and so on: its a full time job and that takes the load from
the nurse, so they certainly don't mind my being here all the time.
3 p.m., Susan began to become nauseated. It was a symptom of her body's
chemical imbalances; it got worse and her pulse and blood pressure began
to collapse. Within moments, her room was filled with nurses and doctors
and the resuscitation equipment. For an hour, she was very close. Her
pulse fell to 35 or lower; she was skipping heart beats, her blood
pressure wasn't there, she began to pass out. At five or so, she began to
stabilize again. Her cardiologist decided to put a cath into her heart to
measure cardiac pressure. I held Susan's hand and watched and helped by
passing along things. During the procedure, he said that I was the first
person he'd ever allowed to remain in the room. Susan didn't mind the
procedure too much. By this time, Susan was wired for sound: she had tubes
in and out of just about everything.
At six p.m., UCLA called and said
that a bed was finally available. The ambulance airplane was on its way to
Sacramento. During its flight, they called and asked for Susan's weight.
The nurses said that I was coming along. They said no. Susan insisted.
They asked for my weight. I added that there was about 45 pounds of
baggage. After a bit of negotiations, they said that I could accompany,
but with only ten pounds of baggage. It meant leaving everything behind.
We were ready with only a small bag of things and the laptop. And a framed
portrait of Orion, her cat.
At 7:30 p.m., the airplane landed in
Sacramento. The ambulance picked up their team and brought them to the
hospital. Susan was disconnected from the hospitals ICU monitors and
medical pumps and reconnected to the teams portable equipment. She became
her own rolling ICU. When everything was tested and ready, we all left:
two ambulance people, two air ambulance team, Susan, and me. At the
airport, we loaded into a small twin engine plane. It was extremely
crowded in the airplane: Susan was constantly watched. She was bundled
securely and surrounded by monitors. It was an excellent night for flying:
clear sky, no clouds, full moon, no traffic. Susan felt a bit of
discomfort, so she was given morphine. She was floating on her own cloud.
I sat behind her head and gave her sips of water. With a strong tail wind,
we got to LA 30 minutes ahead of schedule. We taxied to a large hanger
where the LA ambulance was waiting.
After a short ride, we arrived at
UCLA medical center and Susan was brought up to the Cardiac Care Unit
(CCU). It makes ICU look like a day care center. At midnight, Susan was
inspected and poked and yet more tubes and sensors were added. There is so
much telemetry here. You'd need a road map to follow all of them. I've
learned to follow the readouts and I keep an eye on things. A cath was put
into her bladder; nearly half a liter came out. That relieved the
pressure. From 1 am to 3 am, I dozed next to her bed; its four am now,
Saturday, and she's asleep and stable. At ten am, there will be another
series of inspections and decisions. Ill try to write again
Susan says many hellos to everyone. As I add each name to her
support list, I tell her who it is and she say, oh, yeah, say hey to
them... She's very, very glad to hear from each of you. She says "today
was the worst day of my life. Thanks for the prayers and candles: it
worked." A little bit ago, she awoke, saw me writing on the laptop and
asked if there was a telephone port in the room so that we could connect
the laptop. By tomorrow, she'll probably be online again. Can't keep her
down... they'll probably have to pry her fingers away from the keyboard as
they take her in for her transplant. "no, tell the donor to wait! I have a
great pickle recipe!"
Tuesday January 9 23:49 1996
Subject: Tuesday Night,
Tuesday night, near Midnight
This morning, I
saw a very robust young man being cheerfully greeted by the staff. When he
walked past my room, I asked him in for a moment. I asked him if he'd had
a heart transplant. He said it was a year ago. He's in blooming good
health now. He looked just great and healthy and athletic. I was
overwhelmed and started crying. I asked him what he had looked like
before. When he had been admitted, he was 260 pounds. I told him that I
was waiting and that I'd almost gotten one last night. He told me that I
shouldn't worry: this is the best place in the world. I told him about the
net and all of my friends who are writing, that I felt I was being
supported on a wave of love. He agreed, that it takes your friends to get
you through this. He reminded me that it's a big responsibility to get a
heart. I'm really looking forward to the day when I can be healthy again
and give back some of the love I've received.
Andreas brought a big
sack of bagels and creams for the staff this morning: they loved it. Cream
cheese, lax, and so on. For hours, you saw nurses walking around with a
bagel in their hand.
It's been a good day: quiet. I slept most of it,
after all of the excitement of last night. The neck catheter was removed
and that got rid of a lot of tubes. Ray arrived with our car and clothes.
Andreas is finally wearing a different shirt. He and Ray went out to a
Persian restaurant: I was so jealous.
It's midnight, I'm very sleepy
now, good night to everyone...
Date: Wednesday January 10 09:56 1996
It's Wednesday morning here. Susan is dozing.
night, the surgeons came in and said that they had a possible heart for
her: tests would be made and the decision would be reached at 3 am. I had
just gone home to sleep; I came back to the hospital again. Shortly, the
doctors came back and said that they were uncomfortable with certain
issues and they'd have to wait for the next heart. The heart went to
Susan was crying and scared, of course. She calmed down
It's Tuesday morning now: Susan has gotten a sponge bath; her
hair's been combed, fresh sheets, and she's tired but happy.
(from rfc) is driving down from Sacramento today with our car and
Cards are starting to arrive: thanks, folks! I read all of
your e-mails to Susan.
Susan's Jewish name is Shoshanna Hannah, for
those who've asked. Some of my best friends are Catholic and Lutheran
priests: she needs all the help she can get.
So now we wait...
Date: Thursday January 11
Subject: Hattie's UCLA Med Food Review!
couldn't keep Hattie down: Here's her food review from her hospital bed at
the UCLA Cardiac Care Unit (CCU) where she's awaiting her heart
Say hey, y'all!!
Well, the food *is* better at UCLA
than Kaiser. Presentation is better, with meals in little ceramic dishes
set in trays. Portions are still standard sized (just what the dietitian
orders!) and Kaiser and UCLA use the same type of rubber eagle, for
example. I ordered a fruit plate and the amount and presentation, quality
and freshness of fruit was very acceptable. There were whole, large, and
sweet strawberries, pineapple, and red grapes. Lunch today was the
aforementioned rubber eagle sided with rice and a nice mushroom sauce,
with perhaps some wine in it. I ate a few bites of the rice and gravy. I
didn't eat the salad. Andreas finished my meal and had no
In terms of ambiance, well, its like eating in a busy truck
stop but the staff are very nice. Dietary aides do *not* introduce
themselves; so one isn't bothered by that "Hi, I'm Tiffany (with a dot
over the "I") and Ill be your server tonight."
I'm on a CCU diet but
I'm trying to reduce the amount of protein and potassium I eat because my
kidneys are dicey. CCU diet is low fat, low salt, restricted calories.
Dinner tonight was lasagna with peas, a salad, a roll. I ate the peas and
some of the lasagna. The lasagna was fine for CCU food. Most wouldn't like
it because there is little other than ricotta (most likely low-fat at
that) and not the usual slathering of mozzarella and parmesan cheeses. I
wouldn't duplicate it at home, but it wasn't bad. The marinara sauce was
I still don't have much of an appetite but that's
Take care. They are wonderful to me here.
Date: Thursday January 11 23:33
Thursday Night, 11th January.
Susan had a good day Wednesday:
she was able to stand up out of bed for ten minutes, which meant that the
nurses decided that she could take a shower, her first since the 29th of
December. It was either that or they'd hose her off in the parking lot!
Until now, I'd lean her over a wash basin and wash her hair by hand. She
was reconnected to mobile equipment and with two nurses, taken into a
shower. She was very happy afterwards, fresh shampooed hair and washed all
Another room was free and Susan got to move: she now has a larger
room with a window. The Los Angeles weather is incredible: low 80s and
sunny. It's like summer here. To the Angelenos, however, it's winter and
they walk around in sweaters. I wear shorts and T-shirts.
afternoon, a nurse asked Susan if she wanted a pet visit. UCLA Medical
Center has a staff dog that visits patients. After the paper work (it had
to be prescribed by a doctor), Libby the Cocker Spaniel came in.
Libby has her own UCLA photo ID
and staff title (K-9 Therapist). She has her rounds and visits patients.
The program started six months ago and is very popular. Libby jumps up on
the bed and lets herself be petted.
Susan was able to sit and look at
e-mail; her mailbox has over 280 e-mails. All in all, a good day: showered
and relaxed. I took a Polaroid of her on her favorite blue pillow, you can
see that photo at the web site as well.
Today, Thursday, hasn't been
good. Her kidneys have stopped functioning and the toxins in her body
cause nausea and discomfort. It's a secondary effect of her heart failure.
She was given strong sedatives in the morning and has tossed and turned
all day with achy, dizzy feelings. All afternoon, urologists and other
specialists have looked and poked at her kidneys with ultrasound and other
things. They are trying different things with her kidneys. If the kidneys
don't start working by tomorrow, they'll start her on dialysis (a kidney
machine to purify the blood).
She's heavily sedated. One of our closest
friends, Bill, flew in from Seattle; Susan didn't know he was coming. She
awoke, saw him, and fell asleep again. He stepped out of the room. A few
minutes later, she woke and said to me "I dreamt I saw Bill standing next
Mimi and JB Hiller came by, but Susan was asleep. Kay and Jack
came by this evening as well. A staff therapist wants us to keep track of
the number of visitors; this afternoon I made a graph out of the numbers
and days and entitled it "Susan's Nielsen Ratings". One of the windows is
nearly covered with get- well cards, cat photos, and so on.
It's been a bit of an adventure to get the pic of Libby and Susan. Bill and I
walked out of the hospital to find a place that had a scanner. After a
long walk and asking at many places, I saw a store that had a sign that
said "Computers". We walked in and I asked the fellow if he had a scanner.
He said "Yes, but..." I asked if he'd scan a few photos. He said "Oh!
That's an old sign. We're not a computer store." And I said "But you do
have a scanner." He said "But we're a non-profit." I said "No problem!
I'll make a donation!" So we got the Polaroids scanned. I brought the
disk back, edited the pics with my laptop's graphics programs, and sent
them to the web site.
I'm very glad that Bill and Ray are here: I get
out of the hospital and walk around a bit. I've been spending 14 to 16
hours a day there, every day.
Susan's IVs in her arms were removed
which is better for her; her forearms and the back of her hands ached from
the needles. A new catheter was placed into a neck artery and all of the
IVs are channeled in through that; it also monitors the pressure within
her heart chambers. Tomorrow, Friday, will see whether her kidneys start
working again or she goes on dialysis. She doesn't have much appetite; the
smell of food nauseates her. She's eating mostly fruit plates:
strawberries (big, beautiful, tasty ones), chunks of fresh pineapple, and
grapes. A bit of cottage cheese. Different fruit juices. That's about
We never know what to expect five minutes from now. At any moment,
the doctors can come in and say that they have a heart and the surgery
begins. Each good-bye may be the last. It's very disorientating. UCLA was
kind enough to loan me an extra pager; an LA pager company gave them a
boxful of pagers. I sit down to eat, without knowing whether
I'll have to jump up and run off.
Date: Friday January 12 23:56 1996
Subject: Hattie's Update: Friday, 12th
Friday, the 12th of Jan.
Well, no news is good news: nothing
has changed from yesterday. Susan's kidneys aren't working and the doctors
are trying different things to get them to start again. The toxins in her
body cause pain, nausea, and itchiness; she was heavily sedated and slept
most of the morning and up to about 4 p.m. She woke up and felt a bit
better; her blood pressure climbed high enough that she could climb out of
bed and sit on a portable toilet and was able to urinate. That brought
cheers and smiles from the urologists, doctors, nurses, and other staff.
Her kidneys are still working, if only slightly. If the kidneys stop, then
they'll switch her to dialysis, but that has the problem that her kidneys
may take a long time to restart. They would rather see her kidneys working
first. It won't prevent the heart transplant; it'd just be a secondary
The poor girl, she's so sedated and nauseated that she's
eating very little (today she ate: two strawberries, a slice of pineapple,
a few grapes, and drank several cups of water). But the kitchen, regular
as clockwork, sends up another tray of food: they remove the untouched
breakfast tray and replace it with a lunch tray; later, it's removed
untouched and replaced with a dinner tray.
She's getting piles of mail:
get-well cards and cat cards and cat pictures and cat calendars: she reads
Several people have asked what happened to the heart that
she couldn't use the other day. It went to a fellow who was number two on
the list. He's in the Surgical Intensive Care now, recovering.
have asked if Susan needs blood donors. No, it's not necessary. The
transplant surgeons recover and reuse all of the blood in the chest. At
the most, she'll only lose a few teaspoons of blood.
It's weekend now
in LA, which means increased accidents and trouble, so it may be possible
that something may happen. Very odd to think that someone in LA is walking
around with a heart that will soon be in Susan. I've become an extremely
cautious driver: Susan hopes that all of you drive
that back East, it's blizzards, but here, it's summer: mid-80s and sunny.
Wearing T-shirt and shorts, I took a break this afternoon and went with
Ray and Bill to the beach (Santa Monica and Venice Beach, where Baywatch
is filmed). took off my shoes, and walked for a very long time, up to my
knees in the surf. Bill found a Capt. Picard figure in a shop, which he
bought for Susan to hang above her bed. We told Susan about the beach and
she's ready to go.
I tried to sleep last night without Ativan, a strong
sedative, but I only tossed and turned and had strange nonsensical dreams.
This evening, Susan wanted me to lay in bed with her, so I did, and I fell
asleep instantly; the nurse said I looked too peaceful there to
Good night to everyone,
Date: Sunday January 14 03:41 1996
It's 2 AM 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
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.
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
schadenfreude. 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.
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
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
Since the dialysis is a four hour procedure and dreadfully boring, we
began to fool around. Fran suggested a photo. I
squeezed into the far corner and took a series of pics around the room.
Here's where we've spent these three weeks. Fran dressed Bill up as a
dialysis nurse. Fran said that they sit around all day, so they're always
fat. So we pushed a pillow under his gown. He's waving a bed pan at Susan.
Over Susan, you can see Captain Picard, patron saint of heart transplants.
And Susan, typically, is clowning around. Here's Susan and Bill (it's 160 KB, but it's worth it).
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.
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' Sacramento 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 Sacramento 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 2 AM. 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.
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.
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'.
If you are wondering who I am, Susan and Andreas helped me through my
chemotherapy and are good part of the reason why I'm still
Date: Sunday January 14 09:23
Subject: Hattie Update
Susan's Sunday Update:
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
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 angle fish, a clown fish (small and orange, with a white stripe),
and a zebra fish. 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. She's taking great care of the fish. If a fish is swimming oddly or
they hadn't yet been fed, Susan has no problems in hitting the heart
attack button, which brings nurses into the room at a trot.
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.
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.
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!
Andreas is here and he needs to go home. I'm a bit tired. Thank you again
for your love and support. I don't have words to really say about how
grateful I am - we are - for your love.
Date: Wednesday January 17 10:52 1996
Subject: Hattie's Update
Wednesday, Jan. 17th, 1996
On Monday, Susan was put
on dialysis. Her kidneys weren't working anymore. The dialysis machine is
about the size of a washer: the blood is led from her through a pump,
through a filter which removes just about everything, re-warmed, and back
into her. The process takes about three hours. It was carried out twice on
Sunday and twice again on Monday. The effect was tremendous: by removing
the toxins from her body, she's recovered completely from her pain. Within
hours, she was sitting up in the bed, talking, trading jokes, laughing,
and complaining about the hospital food. Her kidneys haven't given up;
they've began working again. Perhaps they were overloaded with the state
of her body; the dialysis made it possible for them to recover. I felt so
relieved at seeing her acting normally again that I was finally able to
sleep most of Tuesday.
Susan's back to "normal"; she's still connected
to a number of tubes, but she's sitting up in a chair and goes for short
walks (with a nurse who pulls all of the intravenous stands along). She
can't remember the last four days: she was so sick and she was so zonked
on sedatives. Her brother and his girlfriend came by Monday night and we
got her in a chair and washed her hair, combed it, and got a hair dryer.
She was happy to be clean again.
On Tuesday, after a three day weekend,
20 get-well cards and cat photos arrived; today, another 25. One of the
walls is half covered.
The nurses told me that her better condition
will lead to another kind of problem: boredom. Now that she's alert,
she'll notice how monotonous her days are.
We were also told by the
nurses that Susan may have to wait some time for a heart. Originally, she
was to have been transferred to the Kaiser Los Angeles hospital (we are
members of the Kaiser HMO and health insurance), where she would wait for
the heart, but now, since she is in such critical condition, it's much
safer to keep her at UCLA, where the staff is familiar with her condition
and they can take care of her. Her nurse tells us that the average wait
time is six weeks, but no one can plan: it may be tonight and it may be in
seven weeks. In any case, now that the crisis of her immediate survival is
over, we should adjust ourselves to a longer wait. Therefore we began to
rearrange her room to make it a bit more livable: moved her bed so that
she can look outside, where there's a large pine tree with a squirrel
family. She hadn't eaten very much in the last week, literally only a
couple of strawberries per day, because of nausea. Her brother went out
and got a milkshake (vanilla, malted, giant size); she drank it down in
one long slurp. Mimi and Kay and other LA rec.food.cooking foodies are
organizing a cook-in for her to make more interesting and tasty
Since she is better, this morning, Wednesday, I drove six hours
up to Sacramento, to take care of mail and bills, to remind the cats as to
who pays for the cat food, and pick up more clothes and things. I'll drive
back to LA tomorrow, Thursday. We're beginning to think about renting an
apartment in LA for a short time, since she'll have to be there for six
weeks after the transplant, so that we can bring the cats down. I'm going
to contact my recruiters and see about getting a short-term contract job
in the LA area (I write computer manuals and make web sites). It's odd to
be back home in Sacramento; everything is here as if nothing were
happening. Our four cats were happy to see me again: they milled around
and walked between my legs; they follow me from room to room. As I write
this, I'm surrounded by a circle of cats. Our poor answering machine had
several dozen messages.
Several people have asked me if I'd write a
book about all of this. It's too personal.
I feel that it should stay this way: that I write these updates for those
of you who are concerned and interested in Susan. It's something for us,
the people who are around Susan: me, her family, friends, and her friends
from rec.food.cooking and the transplant list. The net has made this
possible: we read every single message that all of you have sent, yes,
sometimes several hundred a day, and it makes it easier to remember that
one isn't alone. Susan and I are very happy for your support; the nurses
don't know what to make of all of this. People come by and handfuls of
cards arrive and the nurses ask who these people are and we say "oh, friends from the net."
So, Susan is feeling much better. In a day or
two, she'll be back at the keyboard from her hospital bed. She tells me to
tell all of you: drive safe and wear your seat belts!