Surgery Tips

Here 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 horrible hospital experience with a lot of
unnecessary pain.  It prolonged my recovery time and left me very 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 been doing some research, and apparently,
this unevenness of care is very common.

TO FIND OUT AS MUCH AS YOU CAN.  I recommend a book (out of print 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 happen, 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 means 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 possible.  Holding back from ringing will not
get you a faster response when you do ring.  Be clear and factual 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, but they’re busy and things fall
through the cracks.  Always ask when something will be done and 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 nursing 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 find 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 get out of bed post-op if the rails
are up.

(9) Ask how TV and phone service works at the hospital.  You may 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 I contact them?”   Get details.  If necessary, ask to
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 nurses 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 request?  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 position.

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 a very vivid imagination and was probably
rating too low.  Also ask if the hospital has set some arbitrary 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, my epidural didn’t work properly — if
I could do it over again, I’d take a morphine pump.  My recipient had one and was much more
comfortable than I was.  Since then, I’ve heard good things about 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 surgery begins.

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 or 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 you might want to ask about this issue in
advance so you won’t worry if and when you experience it.

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 difference 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.  There’s a refrigerator in the unit kitchenette,
with a few basic food items.  Don’t let anyone leave your meal out of reach or move your food out of
reach when they come in to do something else.  Most hospitals will let you “select” from a “menu” — but
your chances of receiving what you chose are probably no higher than 50/50.

I’m sure this is different for each individual and type of procedure, but here are the things I learned
about recovery:

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 was 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 have 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 at 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 “What 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 the 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 the 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. Herzfeld   7/1/2001