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.

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