A Transplant Patient's Experiences with Exercise
by Jim Gleason, recovering Heart Transplant Patient
(transplanted 10/19/94)
This is one in a series of short articles sharing this
heart transplant patient's experiences in some area of common concern.
Included in the series are similar articles covering Nutrition,
Weight Change, Biopsy, Rejection, Medication, Exercise,
Motivation & Boredom, Transplant Surgery, and Fear &
Facing Death. These are not meant to replace any professional
medical advice, but rather are one layman's interpretations
of actual experiences he had while waiting for, undergoing,
and finally, recovering from, a heart transplant at the University
of PA Medical Center. While each person will have their own
unique experiences, many have found this simple sharing to be
of value in reducing their own concerns seeing that such
feelings and experiences are part of the normal recovery process
seeing that there is light at the end of what may now appear
to be a very dark tunnel through the eyes of another who has
passed this way ahead of them and, most importantly, the light
at the end of that tunnel is not a train engine coming
directly at them, it is the light of another sunny day,
another gift of a day of life. May you find joy in that daily
gift of life as I have through the miracle of this medical
science known as transplantation.
"I'm not an exercise person." This
protest comes to mind so automatically whenever the subject of
exercise arises and I reflect on my growing up philosophy: If I'm
going to work at lifting weights, I'll do it where they'll pay me for
it, like a stock clerk in the store during my teen years. Well,
that has changed now that my recently acquired new heart - a 20
year old heart in this 52 year old body! - requires ongoing
exercise to maintain its well being. Funny how we'll work at something
like this AFTER the damage is done, rather than exercising to
keep the original heart in healthy shape. But that's history. The
new heart is fact - and my daily amazement at this miracle never ceases.
In this monograph we trace the changing attitude and practice of exercise
in this transplant patient's life - before, during and after the
transplant surgery. The story easily breaks into five phases and
the role of exercise and its associated challenge is different in each
phase:
- Phase 1 - weakened heart, prior to diagnosis for transplant
- still at home
- Phase 2 - pre-surgical wait in the hospital - weakened heart,
but on support medications
- Phase 3 - post-operative transplant recovery in the hospital
- Phase 4 - ambulatory recovery at home - immune suppressed,
lots of medications with potential side-effects
- Rest of life - back to "normal" mode - but
with a new heart
Phase 1 - Homelife
Before Diagnosis
My life was an active one, but without formal exercise.
Since the onset of a viral attack on the left ventricle
(pumping muscle) of the heart (know as Viral
Cardiomyopathy), things started to slow down as it took
increased effort to maintain the normal active lifestyle
associated with a growing family and worldwide business travel.
Activities normally taken in stride now were causing shortness of
breath and easy exhaustion. Friends later would admit to
having noticed these symptoms, but seldom raised the
issue. After all, I was 50 years old, and we all know
what that means (?!). Finally the enlarged heart wasn't able
to keep up with the rest of the active body and the
cardiologist, who had been treating the condition with an
aggressive drug regimen for 2 years, directed that I
"cease employment" and go down and visit with the specialists
at a heart transplant center. Lucky for me, the obvious
one turned out to be the best, the University of PA
Medical Center, in nearby Philadelphia. Within a day we
were told that the only hope was to undergo a heart
transplant and that the condition was serious enough that
I should not leave the hospital even as we talked. Wow!
Shock!! "Who, me?" Weighing the alternatives:
no transplant, maybe 1 to 3 years of life left and even
that would be a very low "quality of life" - we
decided to go for it, and thus entered the next phase...
Phase 2 - Hospitalized,
Waiting for a Donor Heart
Obviously, while you are laying in bed waiting for a heart,
there isn't much you can do in the way of exercise,
right? NO! Not true - there are
any number of things you can do - and, in fact, must do
to increase your chances of success and improved quality of
life post-transplant. First, consider what Deepak Chopra,
MD says in his book, Ageless Body,
Timeless Mind. (Ref p.65)
"...prolonged rest is disastrous for the physiology
- a hospital patient confined to complete bed rest for a
few weeks will suffer as much muscle and skeletal wasting
as someone who has aged a decade."
Secondly, the transplant team encouraged any type of
exercise as a way of strengthening the body for the
upcoming transplant surgery. Not knowing how long the
wait would be for the availability of a donor heart, you just
couldn't lay back and wait. During my wait (which stretched
out to 5 weeks of hospitalization), there were two other long
term patients awaiting hearts too. Both had already undergone long
waits before my arrival, eventually waiting 7 and 9
weeks, respectively. John suggested we get a name for our little
group and thus we became known as "The 3 Heart
BEATS" (for Bodies Eagerly Awaiting Transplant Surgery).
On any given day, one of us might be feeling lazy - ready
to lay off the daily exercise - but Ron (who often did up
to 34 miles of exercise bike riding a day in his room -
yes, while awaiting a replacement heart!) and John would
show up at my door and announce that the
"BEATS" were going for their daily walk - and
so off I would go. What a sight, the three of us, each
with IV pole in tow, John and I in colorful shorts
(anything to get out of the drab HUP hospital gown),
walking (somedays slower than others) around the exercise
"track" - using that term loosely. Our
"track" was the hallway around the Cardiac Care Unit
down past the Intensive Care Unit. With nothing to do on
this walk, being a math teacher, I counted the floor
tiles, each measuring 12inches, and thus calculated that
once around the course was 1/8th of a mile. So, as we worked
ourselves up over the weeks (yes, as the hearts were getting
weaker, we were getting stronger through this exercise - both
mentally and physically), we set goals of a mile a day (8
laps) - quite an accomplishment in our condition. When
mail would come, I would force myself to leave it on the table,
allowing the treat of opening one piece with each lap
completed (got to make this exercise fun...). Many of the
stories related in the monograph on Motivation occurred
during the course of these walks, looking in on the patients
in their rooms, collecting smiles and offering greetings
of encouragement as we long timers (most cardiac patients
came and went in a matter of a few days - we knew the lay
of the land because of our weeks of experience there) did
our rounds each day. Another part of our program was education
and support from a physical therapist. She monitored our
in-room workouts using a bicycle pedal machine (an alternative
was to use a real exercise bike, but that seat was tough to
take). Again, the thought of time lost just exercising
caused me to take my own approach which involved
something to focus my attention. This could be a TV show,
or more often, a Walkman tape player with earphones to
listen to music, self-improvement tapes, or even books on tape.
While the therapist monitored heart rhythms, heart rate,
and blood pressure, I would often be off someplace in my mind
in another world based on the books I was listening to.
Time flew when you were so entertained. When it came our
turn for the transplant surgery, all three were in the
best shape we could get in to improve our results.
Finally, that time did come, for all 3 Heart BEATS in the same
week! First Ron, then me, then John - wow, talk about
your miracles.
Phase 3 - Post-operative
Recovery in the Hospital
As soon as we came out of the sleep after surgery, actually
the next day, nurses helped us sit up and start with the
exercise of slight movement - talk about starting all
over - and we thought we had been in decent condition.
Within days we were walking the course again - IV pole
with more tubes, and much slower this time. But we now
had a timeframe for our goal - 10 days if all went well,
and we could go home. That's all we had to hear. After
all these weeks, the thought of going home was a real incentive.
When we found out that one of the conditions for going
home after surgery was the passing of a test to show we could
get around, including going up some stairs, the pattern
of our walking rounds was modified to include the climbing up/down
of stairs at the end of the unit (only 4 steps, but what
a positive difference this made when we came out of
surgery). The steroids that prevented heart rejection
also played havoc with the body muscles - especially
those in the legs. These muscles would turn to Jell-O
almost overnight if we skipped our routine, and then you
had to start over, rebuilding that Jell-O into supporting
leg muscles again - ouch! Even a final visit with the
therapist to the hospital gym (physical therapy room)
with the leg raises and step climbing test was taken in stride. While
in the therapy room, an elderly lady was being asked to
do 20 leg raises with weights on each leg. Boy, did she
complain! - but that was more than I felt I could do!
Talking to her, urging her on by counting "one, two three..."
- and trying to keep up with her from my own wheelchair was
a mental challenge. How can a youngster like me not be
able to do it, she wanted to know (to this 80 year old woman,
50 is just a youngster - its all relative). I explained
the side effects of the steroids and keep counting with
her. Then, across the room, we noticed a really young man who
couldn't do the leg raises at all - he had no legs. With
that pointed out to her, she and I found the cadence
picked up and lots less effort as we sang together:
"One, two three...ONE, TWO, THREE!!!"
Like I said, its all relative.
Phase 4 - Recovery
at Home
Oh, was it so great to finally get home again. After more
than 6 weeks away, I had to think where we kept the
glasses for a drink of water! The home was like a new
house. And the stairs to our bedroom were like Mount
Everest!! Each step up was like lifting weights equal to
my 200lb frame - if fact these legs were being called on
to press that weight - best I could do was two steps,
then pause to let the heart catch up. But I could now go
out and walk in the open sunshine!! Wow! Awaking from the
surgery, it was like a breath of fresh air coming in the
open window - open to the cool fall breezes. Now I could actually
go out into that cool air. Family had treated me to a set
of exercise clothes and walking sneakers - nice and new -
how motivational. I felt like a million bucks! While restricted
to staying away from crowds and physical contact due to
the immune suppressed body system, walking was an ideal release
and exercise. Quickly the "course" of the neighborhood
was measured (using the odometer in our car) and goals
set. At first it was an exciting effort (despite fears of
my family of support) just to get to the corner and back
- but I really felt like a new born baby exploring the
world for the first time - only this time I could express myself and
had 50 years of experience to magnify the awe, not to
mention the mobility factor that the baby lacks the first
time around. Following the literature supplied by the
therapist before leaving the hospital, these daily
walking goals were increased slightly each passing week.
Weather held up, and despite warnings that the transplanted patient
has a terrible time regulating body temperature, with
proper clothing, hardly a day was missed in the walking
routine, eventually building up to 3 miles a day - 1 hour
in length. Again tape of all varieties became my mainstay -
taped correspondence from family and friends, beautiful and
varied music (there's some great walking tape programs
out there - i.e., Richard Simmons, Jane Fonda, etc. -
that integrate the right beat with music and motivational
talking), self-improvement and taped books, all served to
make this time very pleasant and something to be looked forward
to - an important element that will continue for the rest
of my (now extended) life. Five weeks into being home I entered
a 3day/week, 1-1/2 hour cardiac rehab program at the local
hospital. Insurance covered the expense completely. While
I went into this with the goal of making exercise a
lifetime habit and really expected little else, our
support staff there, Susan and Ceci, insured a well
rounded program that included not only monitored exercise
progress, but also education in all health related areas. While much
may have been a repeat of what we were taught during the wait
for the transplant, this timing was very useful - we were ready for
the information in a different way. This 3 month program
of treadmill and bike exercise was very beneficial, not
only from the education and endurance aspects, but also
from the friendships the class of six offered as we
shared fears, concerns and learned to relax in meditation together.
We also learned how to occupy the mind (beyond just the
use of taped music) and make time pass quickly through
provocative conversation. An open conversation on how we would react
if (along the theme of the movie Indecent Proposal) a good looking
multimillionaire offered $1m for an evening with our spouse
made the exercise hour pass so quickly we questioned if
the clock had even been set - an hour couldn't possibly
have passed that quickly. One day, before starting to
exercise, the monitors captured a condition diagnosed as
a racing heart (165 beats per minute, vs. the normal 84 - known as
SVT's - SupraVentricular Tachicardia) and the staff reacted
immediately. Cardiologist called, on-call doctor responding
immediately, two days of tests and treatment followed by a
brief catheraterization down at HUP to repace the runaway heart, and
I was back in the exercise program good as ever. Over the
3 months, from a 10 minute, level walk, we progressed to
60 minutes of 3mph uphill walking - boy, did it feel great.
By March it was time to move on and return to work, but
the exercise had to become a lifetime commitment, so the
real test was yet to come.
Final Phase - Normal
at Home "steady state"
By March, the rehab program came to a close, we thanked
Susan and Ceci for their support and care, and all went
our separate ways, dedicated to keeping up the exercise
at least 30 minutes a day, 4 days a week. Weather
continued to be great, and with plenty of warm clothes
(and those new sneakers...), daily walking of between 30
and 60 minutes has become my regimen. I really have to do
it early in the morning to insure it gets done - a top
priority. Its amazing how easy it is to fall by the
wayside and suddenly several days are slipping by without
the walking - and immediately you feel the worse for it.
Night time is also a beautiful time to walk - under the starry
night and a monthly bright full moon! - once you discover that
the darkness doesn't mean you can't get out to do that walk. Family
and friends provide great company for such walks - an alternative
to the tapes mentioned earlier. Neighbors will come out to
stop and talk to you constantly - with the beautiful
encouraging words "My, don't you look great!"
(you never get tired of that) - and then there is the
constant wave from friends as they drive down the road
past you - be sure and give an enthusiastic wave back -
it does amazing things for your spirit and recovery
process - better than pills! Another side effect is that while
the steroids cause severe weight gain, the exercise helps limit
that damage. I can't imagine the weight I would have
gained if it weren't for that daily regimen of exercise.
Which reminds me, if you're out looking for a new scale,
look for the feature "STRAIN technology" -
while I don't know what it is, it results in very accurate
and consistent readings - and its not more expensive ($34
got us a good electronic readout unit). An interesting
development was changing from walking in circular
patterns around the neighborhood to walking in straight lines
to actually go somewhere. All of a sudden that 3 mile
walk causes concern from your support people - somehow 3
miles in a straight line seems so far - same time, same
distance, but totally different reaction. And it does
feel very different, having a place to go - so strange to
walk someplace after all those years of riding in a car
to get there. You feel so good again! And again the words of
your friends: "You walked where? But that's miles from
here!" Yep, it is, and I'm able to do it with this
new heart of mine - wow!! "Come walk with me!" The
often heard response of : "No, that's too far!" makes
you appreciate your own miracle even more. "So, keep on
walkin' !" and find enjoyment in
whatever exercise best suits you so that it becomes a
part of the daily activity for the rest of your new life.
I hope this sharing will help you face your own
challenge. It is my way of thanking you who helped in so
many ways.
Posted on TransWeb with permission of the author,
James Gleason. All rights reserved.
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the Heart table of contents
Last modified:
11 May 2000