are some tips for preparing for and recovering from
surgery prepared by Naomi Herzfeld.
While I don't mean to scare anyone, it is important to prepare for
hospitalization. I naively assumed
that I would be told anything I needed to know and that people would do
their best for me. It didn't
happen that way.
The renal clinic staff didn't tell me much about the hospital, and the
hospital staff didn't tell me much
either! Although I had no real complications, I had a
hospital experience with a lot of
unnecessary pain. It prolonged my recovery time and left me
angry. On the other hand, a co-
worker of mine was in the same hospital at the same time, in a unit
adjacent to mine for gall bladder
surgery, and he got incredibly good, attentive care. I've
doing some research, and apparently,
this unevenness of care is very common.
I KNOW IT SEEMS EASIER NOW NOT TO WORRY ABOUT IT -- BUT PLEASE TRUST ME
ON THIS, YOU NEED
TO FIND OUT AS MUCH AS YOU CAN. I recommend a book (out of
but available at libraries and
used bookstores) called How
to Survive in the Hospital by
Joan Hass-Unger, R.N. None
of the other
guides I looked at contained as much usable information. And
seriously consider getting a private duty
nurse for your first 24 hours post-op.
Again, I don't mean to scare anyone, but all donors are doing a
wonderful thing and deserve the best
hospital experience possible. But in order to make that
you need to be at least as
knowledgeable as if you were going on a camping trip or buying a new
car. It is not enough to trust
that the hospital will take care of you just because you are doing one
of the most life-affirming things
it is possible to do.
I've covered the areas I found most important -- hospital environment
tips, pain management, food and
sleep, and recovery.
Many donors are very healthy people who may not have been really sick
and may not have been in the
hospital ever, or since they were kids. These days, hospitals
tend to be minimally staffed. Care varies
from hospital to hospital, unit to unit, and even bed to bed, so you
may have a great experience or
not. Nurses may or may not have the time or inclination to
explain how things work in the hospital...so
in case you're not one of the lucky ones who gets great care without
having ask for it, here's what I
wished I'd known:
(1) Have a friend/family member with you 24/7 especially while you are
stuck in bed -- or hire a
private-duty nurse. This does not mean "visitors" -- this
someone who will get you ice
chips, adjust your shade, talk to you if you need to talk or stay quiet
if you don't, and talk to
the staff about your needs when your brain is fuzzy post-op.
(2) If you need something, ring as far in advance as
Holding back from ringing will not
get you a faster response when you do ring. Be clear and
when you describe the
problem and how urgent it is -- the clerk answering your call button
can't see you.
(3) Take staff promises with a grain of salt. They mean well,
they're busy and things fall
through the cracks. Always ask when something will be done
who is going to do it. If you
don't get a response after this time, follow up and keep following
up. If someone tries to leave
in the middle of a task, make sure to ask when they'll be back.
(4) If you want to be sure your doctor is aware of an issue, leave a
message at his/her office or ask
the nurse or resident to put a note on the front of your chart.
(5) LAST RESORT ONLY: Ask to speak to the charge nurse or
supervisor. Finally, you can
call your doctor's office or answering service, using your bedside
phone -- have your doctor's
phone number with you.
(6) Ask your doctor or nurse as soon as possible (even before surgery)
what medications have been
ordered for you -- both mandatory and "on request". You may
you can ask for "comfort"
measures you didn't know about -- sleep and digestive aids, for example.
(7) If you're stuck in bed, get into the habit of checking that
everything you need (call bell, water,
food, book, phone, etc.) is within reach BEFORE you let people leave
you alone in the room!
(8) Find out how to move your bed rails up and down. Sounds
stupid, but even in the same
hospital, different beds work differently. My first morning
post-op, ravenous after 30 hours of
fasting, I spent a half hour staring at my out-of-reach breakfast
tray-- because the aide who
left it didn't know how to lower the rails and get the table close, and
then told me she'd be
back soon -- and never returned. It can also be difficult to
out of bed post-op if the rails
(9) Ask how TV and phone service works at the hospital. You
need to request the service
and/or pay cash. Depending on how you feel, you may want to
unplug the phone at times --
hospital switchboards usually have a cutoff but it may be quite late or
you may just not feel
good enough to receive phone calls.
(10) Don't bring anything valuable to the hospital. If you
receive gifts, send them home with friends
and family -- also saves effort when packing to go home.
Before going into the hospital, talk with the surgeon about having a
plan for pain relief in place ahead
of time, with contingencies for "What my pain relief method doesn't
work? Who can help me? When
are they available? What if they are busy? How can
contact them?" Get details. If necessary,
speak to someone on the hospital's pain management staff.
Don't settle for, "They'll take care of that in the hospital." Once you
are already in the hospital, it is
much harder to get a cohesive pain management plan, since the hospital
environment has a lot of
people who are very busy, see you only briefly, and go on and off
shift. I found there was not a lot of
communication among my caregivers. For example, several
were unclear about which
department was responsible for maintaining epidurals and were leaving
messages with the wrong one,
resulting long and painful delays.
When you're in the hospital, if you're on pain pills or shots, ask your
nurse immediately when and how
they will be delivered. Is it on schedule or on
How far in advance should you ask in order to
get it on time? Can you take anything between doses for
breakthrough pain? Ask about what position
would be most comfortable, and if necessary, for help getting into that
It's easier to control pain and you'll need less medication if you can
stop pain early and not let it get
bad. If you are asked to rate your pain, don't
underestimate it -- keep in mind that a level of pain that
is tolerable at the moment may become pretty unbearable if it doesn't
let up for another three hours.
Ask if the nurse has a "Faces" pain rating chart -- it may help you
communicate your pain level more
accurately. I found the "scale of 1-10" hard to use -- I have
very vivid imagination and was probably
rating too low. Also ask if the hospital has set some
level as a goal for pain relief, or if they
will encourage you to determine what your target level is.
The first couple of days post-op, it felt like a really bad "stitch" in
my side. It wasn't so bad moment to
moment, but not having it let up much was a problem. However,
epidural didn't work properly -- if
I could do it over again, I'd take a morphine pump. My
had one and was much more
comfortable than I was. Since then, I've heard good things
morphine pumps; mixed reviews on
epidurals. Epis seem to be either very effective or very
ineffective. At my hospital, I also found that
the only doctors who could fix a problem with an epidural were
unavailable for long periods -- busy in
the O.R. or available only during limited daytime hours. I've
read that if you do get an epidural, it
works better if they actually start it running and test it before the
In either case, keep in mind that the staff may start you at the lowest
dose possible and wait for you to
ask for more pain relief, instead of starting higher and adjusting it
down. I don't know for sure but I
think I was undermedicated because they were afraid of giving me very
much -- I'm very small and
normally have very low blood pressure.
Ask in advance if the surgery will stretch or injure any
nerves. Waking after surgery, I had a
mysterious numbness in my leg and was convinced the surgical stocking
was cutting off my circulation!
I kept pulling at it, and it was only later they told me that the
surgery stretches the nerve serving the
skin of the thigh. The weird thing is that this type of pain
numbness is not right next to the incision
-- later, when I was getting some sharp twinges from the nerve, I
thought I'd herniated or something
awful. The pain and numbness mostly go away over time, but
might want to ask about this issue in
advance so you won't worry if and when you experience it.
FOOD AND SLEEP
The first night post-op is filled with vital sign checks, beeping
machines, weird boots that inflate and
deflate every few minutes, noises in the corridors, unfamiliar place
and unfamiliar sensations. So ask
for something to help you sleep. It will make a huge
in your mental clarity and emotional
outlook the next day.
Food varies from hospital to hospital, so if you can't eat the hospital
food for any reason, have your
loved ones bring you any food that the doctor says is OK.
a refrigerator in the unit kitchenette,
with a few basic food items. Don't let anyone leave your meal
of reach or move your food out of
reach when they come in to do something else. Most hospitals
let you "select" from a "menu" -- but
your chances of receiving what you chose are probably no higher than
I'm sure this is different for each individual and type of procedure,
but here are the things I learned
The surgeon said that it would take about 6-8 weeks to get 90% back to
normal, and 6-8 months to get
that last 10%, and this prediction was absolutely correct. I
tired and and somewhat sore for the
first few weeks. I went back to work after six weeks, but
¾ days. After eight weeks, I was back to the
full schedule and to my dance classes. (I believe I might
had a shorter recovery if I'd had better
pain control in the hospital.)
Laughing, coughing, sneezing and hiccuping were uncomfortable for 6-8
week -- do not go see
extremely funny comedies during recovery. Just sitting bent
the waist for long periods was
Incisions do weird things as they heal -- I recommend asking in advance
so you'll know what's normal --
don't let them get away with just saying "call me if there's pain,
redness, swelling, etc." Hospital
discharge instructions are VERY minimal. Ask your surgeon
will the incision be like as it heals?"
For an open procedure, it is normal for a large ridge or lump to form
under the scar and stay for a few
weeks -- there may be little "knots" as well. Numbness around
incision is common and there may
be a little numbness and pain nearby as well, if a nerve was cut or
stretched during surgery.
I went home with just strips of tape on the scar, and was told to just
let the tape fall off when it was
ready. When it started peeling up, it got inconvenient and
nurses told me to trim the ends. Some
people may be allergic to the antiseptic under the tape or to the
adhesive -- if so, call the doctor and
ask if it's OK to remove the tape.
I was worried about the scar but it was much neater than I
expected -- they didn't use staples -- they
did these neat little under-the-skin stitches that healed
beautifully. The scar is barely noticeable now
after 18 months -- they try to fit the incision along a natural curve
of the body so it is less visible. It
had faded considerable by 8 months or so.
I could predict the weather by twinges for a few months after, but
that's mostly gone, and the
numbness is going away too. I feel just as good as before, my
creatinine is actually lower.
My recipient (a co-worker) feels great too, now, but it took over a
year. The kidney worked really well
right away, but she had a lot of complications from the medications and
surgery, and for many months,
she felt worse than she did before the transplant. It was
depressing for both of us -- but she hung in
there and now she tells me she hasn't felt this good in years!!
Thoughts and Advice on
Donating a Kidney by Naomi B.