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| Author |
Message |
| 25 new of 257 responses total. |
jep
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response 64 of 257:
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Aug 29 02:39 UTC 2003 |
You sounded a lot more chipper Thursday when I read your update than
you did on Wednesday late evening when I read those updates. I'm glad
and I hope it means you're feeling much better.
Yesterday it sounded like you weren't coming out of the hospital.
Today it sounds like you're going to rip through your chemo and be
back home in a couple of days. I haven't got a clue which impression
might be accurate but I am certainly cheering you on.
John III knows you're sick, says he's worried about you, and wishes
you the best.
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jmsaul
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response 65 of 257:
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Aug 29 03:14 UTC 2003 |
Need some cheddar cheese? I can drop it off.
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cross
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response 66 of 257:
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Aug 29 03:57 UTC 2003 |
This response has been erased.
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keesan
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response 67 of 257:
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Aug 29 16:34 UTC 2003 |
Continued - my feet to hit the ground is the commode. The surface is a bit
hard so I put a pillow on it. This confuses people who come to empty it.
I am much much better. This morning I told the doctor with the
every-lengthening train of medical students on early rounds that the
IV in my right arm was preventing me from sleeping (I had to lie on my
back), eating (I am a righty and had to eat left-handed with a spoon
spilling food all over myself), brushing my teeth, etc., so after keeping
it for no good reason for a week they just took it out. I could not bend
my right arm until now - it is a joy having a right arm again. I have
clean teeth and will shower and I ate twice as fast and will be able to
sleep.
The other good news is the midnight shift person who takes blood
pressure has decreed it has to be done manually (stethoscope) instead of
with a murderous machine that cranks it up to about 160 systolic which
nearly broke my wrist and usually got impossible readings (100/90). My
normal and current pressure is 108/65. I used to scream when the machine
took my pressure. To prove her point, she took machine pressure (140/90)
and then took manual pressure twice (110/70 and something similar). So I
am forcing everyone else to do it manually. They take pressure every 4
hours. I am being allowed to sleep 4 hours at a time. I have begged
people for a week to take pressure manually. Clarisse to the rescue - she
has been doing this 16 years. I cite her as an authority. She also tied
the smallest cuff and a bulb to my bed because thereisa shortage of them
and they keep disappearing.
Today again they are injecting a diuretic - up every ten minutes for an
hour or three.
Anyway, these were my worst problems. I tested negative for 10 or so
viruses, no bone marrow involvement,I am breathing well, eating well. Jim
is trying to make me eat yogurt pudding. He brought in a full-fat model.
At 11 they came in telling me I cannot eat for 6 hours before 3 pm. I was
eating breakfast (too many interruptions) so they rescheduled for 4.
I have this cute little bottle of banana flavored Nystatin oral to combat
thrush which I willhave for quite a while. My tongue feels like fur.
Lumch just landed and is going to the refrigerator.
I found a curtain that I can pull between me and the door. Every time I
sit on the commode someone knocks and comes in the door without waiting.
Respiratory therapy just added humidity to my oxygen. Nice.
I have five hours to wrap up with saran wrap and try to shower with a hose
and then I can turn my pump to battery, hook up an oygen tank, and go for
a hike to the patient lounge to help with the edema. I have never felt
quite so connected to my surroundings before.
bp 122/60,
oxygen 94 (97 isnormal)
temp 98.1
No more pain pills - only thing that hurts is a wad of cotton that leftto
catch blood a few days ago thatthe piccnurse has to remove.
The liver ultrasound is because my liver blood test values went
mysteriously up, but they cameback mysteriously down. This is all an art.
They do blood tests every day and adjust things. Nomore allopurinol or
potassium. Only drugs are 2xprednisone (awful taste is blocked by my fuzzy
thrush) and my own vitamins and prilosec. Life is easy. The plastic
mattress is sticky.
I presume I am over my deductible so when they mess up the billing only
the insurance company will case.
Jim will take photos around here. I may try connecting via telnet in the
patient lounge - Jim got it working.
A friend who works here stopped by last night to visit. I am on a special
immune-suppressent floor with all private rooms. No flowers allowed
except via email.
I don't have to eat for five hours. I am tired of trying to get fatter on
low-fat food. Supper will be special - a baked potato with imitation
probably low-fat cheese (they suggested I get iton the side so I don'tneed
to eat it). Somewhere in the hospital there must be someone else who does
not want to substitute sugar for fat in their diet. They ran out of whole
wheat bread but gotanother loaf.
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tod
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response 68 of 257:
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Aug 29 17:44 UTC 2003 |
This response has been erased.
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gracel
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response 69 of 257:
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Aug 29 19:03 UTC 2003 |
When I was in the hospital overnight after wrist-fracture-repairing
surgery, each person taking vital signs was followed shortly by
somebody else taking my blood pressure, and often by somebody else
taking it again. It's normally about 100/60 and the anesthetic (or
shock, or pain pills, or who knows what) apparently depressed it
further, and they didn't believe the first reading. Ever.
I was allowed to use the bathroom in the room, but not to get out of
bed and walk over to it by myself, because they were afraid that with
such low blood pressure I would get dizzy and fall.
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slynne
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response 70 of 257:
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Aug 29 19:55 UTC 2003 |
I am glad to hear you are feeling better. I do appreciate all the
detail of your posts. People dont usually talk about their hospital
stays that much. It is very interesting.
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scott
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response 71 of 257:
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Aug 29 23:45 UTC 2003 |
Ditto on the "glad to hear things are getting better" front, Sindi.
Have Jim bring in a fine-point Sharpie, and write "no needles directly in the
skin" on your arms. While you're at it, also write "blood pressure only with
manual cuff". :)
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keesan
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response 72 of 257:
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Aug 30 00:16 UTC 2003 |
We wrote a sign that worked on the door this morning - something about
needingto draw blood only from the picc - it worked. There are dozens of
plugs here - Jim got hislongest cord with a bad end that kept pullingout but
he fixed it now. There are special plug-in things that wrap around your calf
and are set to squeee the calf to movethe blood. They hurt as bad as the
machine that takes blood pressure. After ten minutes of torture and calling
nurses to takethem off I removed them myself.
The reason I cannot use the bathroom isthat I have an oxygen tube thing
loosely attached to my nose, which I could reattach to an oxygen tank instead
of the wall but why bother, and the device that rehydrates me through a tube
in my arm can also be unplugged and run on battery and replugged, but why
bother. We just unplugged me from it andthe oxygen for the shower.
Today I finished breakfast at 11 - there were blood draws and morning rounds
and stuff in the middle along with vital signs. The med student came to
tellme not to eat after 10 (am) because of a liver ultrasound at 3. They
changed it to 4 and I got to skip lunch. I watched her take lots of photos
(in color) and maybe audio recordings of veins and arteries that sounded like
whale calls. Arteries are louder. You could also see them as electric waves.
All mine are running in the right direction. My liver enzymes wentto high
but wentdown partway again. Lots of mysteries. I can still breathe and I have
a pulse.
Got back to lunch-supper and discovered it was really a blood drawing party.
At 7 I packed up the remains for breakfast tomorrow. They are trying to make
me drink a 200 calorie 'milkshake' (4 oz) daily based on heavy sugar syrup
with skim milk added. I am going to refuse.
My doctor friend stopped by to watch me eat vegetables for a while.
Jim is falling asleep. Me too but they are going to wake me at 8 (it is
8:10)for vital signs so we are waiting. I dream of going somewhere that I
can sleep without vital signs, on my side, no sugar anything, no tubes, nobody
with needles in the morning.
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jaklumen
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response 73 of 257:
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Aug 30 07:05 UTC 2003 |
Refuse? I thought you needed to gain weight. What, so sugar tastes
nasty to you?
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keesan
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response 74 of 257:
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Aug 30 15:27 UTC 2003 |
I do not willingly eat refined sugar. I think it is crazy that the only
things offered to eat in this hospital are all reduced-fat, skim-milk, etc.
The weight gain 'milkshake' is heavy sugar syrup with skim milk and artificial
flavor added.
Today is a day of rest, apparently. No doctor on rounds. I got to eat
breakfast with only a few interruptions for blood pressure etc. I am getting
a backache from the mush mattress and can't sit formore than a few minutes.
They will let me go home when my oxygen levels are okay. Soon?
Not on the menu but available are whole milk and ice cream and one slice of
cheddar cheese per day. They don't want people to know.
I was not allowed to eat lunch yesterday due to the ultrasound. Came back
from the test to a multiply interrupted supper. Got so tired we just
refrigerated lunch-supper and they cleaned the refrigerator this morning so
I am not gaining a whole lot of weight. Can't do it all right at once.
We have applesand peanut butter.
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keesan
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response 75 of 257:
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Aug 30 16:49 UTC 2003 |
At 11:30 the doctor came on rounds with only three people in tow.
I will have another 5-7 cycles at 3-week intervals, outpatient. Don't need
to take any more prednisone or prilosec. They will takeme off the fluids iv.
Only need to do oxygen and I can drag a tank around and go for a walk to try
to reduce the edema in feet ankles and legs. The fluid around the lungs is
not returning fast enough to be any problem. They turned the oxygen down from
5 to 3.5. They keep measuring my weight which is sort of random as it is
whatever fluids they put in and took out.
Lots of spinach for lunch, cauliflower, potato, milk. I asked if they could
add a piece of cheese and a boiled egg. Maybe in an hour or two.
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tod
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response 76 of 257:
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Aug 30 20:07 UTC 2003 |
This response has been erased.
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jmsaul
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response 77 of 257:
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Aug 30 20:37 UTC 2003 |
They've certainly got fatty vegetarian foods down in the cafeteria.
Deep-fried mushrooms and stuff.
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jaklumen
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response 78 of 257:
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Aug 30 20:54 UTC 2003 |
resp:74 If my eating plan continues to be a success (and low-carb
diets are right), then refined sugars really do pack on the pounds.
I'm a little bit leery of Dr. Atkin's notion that fat doesn't
contribute to weight so much, so I try to avoid it somewhat-- although
lots of reduced fat products pile on the sugar, supposedly to make up
for the taste.
What about other carbs? Pasta? You did mention the potato. Yeah,
Tod mentioned pancakes. Maybe pancakes could be good.
I hope all is well and this is over soon. This can't have been much
fun.
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jep
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response 79 of 257:
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Aug 31 02:45 UTC 2003 |
Jim took a picture of Sindi typing on her portable computer, and Sindi
asked me to post it. It can be viewed at:
http://jep.tonster.com/photoalbum/friends/umhosp
The thumbnail is rather unclear; the picture itself is better if you
click on the thumbnail.
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cross
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response 80 of 257:
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Aug 31 04:15 UTC 2003 |
This response has been erased.
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md
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response 81 of 257:
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Aug 31 13:39 UTC 2003 |
Sindi, I have mixed feelings about all this.
I admire your steadfastness. If you think you're driving the help
nuts, you should know that a study of hospital and convalescent home
patients found that, all other things being equal, the patients who
complain the most and are the most demanding are the ones who make the
best recovery and go on to live the longest lives thereafter.
At the same time, I can't help but wish that you'd just drink those
damn 200-cal shakes until they find you something better. You don't
want to be a martyr, I hope. (If I were your doctor, I'd tell the
nurses to use one of those funnels-with-the-hand-crank devices they
feed Strasbourg geese with, so be glad I'm not your doctor.)
But really I just want to see you get well and I'd love to see you do
it your way. "The philosopher is in advance of his age even in the
outward form of his life. He is not fed, sheltered, clothed, warmed,
like his contemporaries."
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tod
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response 82 of 257:
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Aug 31 14:37 UTC 2003 |
This response has been erased.
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lk
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response 83 of 257:
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Aug 31 17:08 UTC 2003 |
Certainly in the short-term it is better to eat bad food than no food.
But the good news seems to be that soon you will be eating food coming
out of your own kitchen!
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cross
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response 84 of 257:
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Aug 31 17:17 UTC 2003 |
This response has been erased.
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slynne
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response 85 of 257:
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Aug 31 18:26 UTC 2003 |
sugar is just carbs too
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cross
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response 86 of 257:
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Aug 31 20:52 UTC 2003 |
This response has been erased.
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md
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response 87 of 257:
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Aug 31 21:37 UTC 2003 |
I always read that refined sugar is more like high-octane gas. Empty
calories, pure energy that turns to Elmer's Glue-All in your arteries
if you don't use it. (That applies to glucose in any form, from
refined or unefined sources, but I don't want to get into that argument
here.) I'm not sure someone in Sindi's condition should be downing the
stuff in one gulp. But finishing it in sips over an hour or so could
supply the energy her body's been forced to steal from her egg and
cheese snacks. Think of it as another kind of medicine -- something
you need that you wouldn't consume in any other circumstances.
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jaklumen
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response 88 of 257:
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Aug 31 22:47 UTC 2003 |
resp:84 well, that's 2 for the pasta.
resp:79 thanks for the pic.
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