A Transplant Patient's Experiences with Motivation and Boredom

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.

Well there I was, laying in the hospital bed, all the initial formalities over, feeling healthy (especially with the support of the new infused medicines), constrained by the fact that my 50 year old heart was unable to recover from a virus attack that had left it with less than 15% of its capacity. The prognosis was good, if(!) a new heart could be found. There was no way of knowing just how long the hospital wait would last and if that wait was too long (again, an unknown period), I would face the alternative, death. More recently on my visits back to that same hospital unit, just 7 months later, some patients are waiting past that point with the use of the LVAD (Left Ventricular Assist Device a mechanical heart on wheels! amazing...).

I laid back and took a nap, the first of many. Awakened for lunch (hospital food, healthy but tasteless due to the restricted diet, that would get more satisfying as the weeks went by), I counted the 4 walls of the room (again...) there were still four. Another nap, another meal, counted those 4 walls again, rested up in anticipation of family visitors. By the time visiting hours were over, it was time for sleep (after the usual regimen of pills a ritual that tends to fill the daylight hours). By the end of day two, the above pattern had become a "normal" day. All my resolve to take advantage of this free time opportunity was quickly lost. All those letters I would finally have the time to write, and the reading I could finally catch up on well, two full days and all I was doing was counting the 4 walls of this fairly nice hospital room. I was exhausted from all the nothing I was doing time for another nap! The professional staff was taking care of my every need but I was frustrated with myself. This inactivity was not my style. Something had to change, after all, I could be here a very long time. Getting up from bed (it was 10 at night) I moved the pole and bags of infused medications over by the chair and table. Long ago I had learned that in order to live one must have clear goals goals that translate into daily actions goals that are simple enough to understand and finally, they must be written down. And so I sat there, connected to all those tubes, and began to write down some simple things I wanted to do the next day.

Pencil and paper that's all it took to change everything. Like what, you ask, did I write down? Well, here are some samples:

• Goal: Each day I would spend at least 15 minutes on spiritual thinking either meditation, religious reading, prayers, i.e., something God/soul related this lended itself especially to the final moments of each day, mentally focusing as I lay ready for the night's sleep. This was both very relaxing, while at the same time giving a peace to the soul that made for a restful sleep. Later, after waiting five weeks (I'm tempted to call them "5 long weeks" but this just wasn't true because the time literally flew once I had a "list of things to do" each day), when it became apparent that my old heart just wasn't going to make it but a few more days, peaceful sleep was still possible because of this goal. Part of this prayer time included asking God to help the many others I had befriended over the days, each facing their own challenge. To each I had promised "to remember them in my prayers" and I did. Even when you feel very helpless for yourself, this gives you a real sense of being able to help others in their time of need.
• Goal: Each day I would meet and remember the name of one new person. This was to be a reaching out when it was only too easy to hide inside my own hospital "4 walls" but then the opportunity presented itself only too easily since every day the roster of patients (and their family and friends all facing a challenge that I only too well understood now) changed. Each day new scared and lonely people were delivered into my neighborhood (i.e., the Coronary Care Unit). All I had to do was look out my window, or walk down the hall and glance into each open room for that look of loneliness or fear in someone's eyes. They were always there some without family or visitors for support most undergoing some strange procedure to hopefully preserve their weak hold on this gift of life. The technique simple: just glance at the person in that bed and, when I had their eye contact, smile and say "Hi!" it was so easy they wanted communicate with someone so bad. Then I would thank them for their smile that had picked up my day when I passed their room, telling them how much it meant to me (it really did! even if they hadn't been smiling too much or at all, yet...). "My name is Jim. What's yours?" That always got a first name. Then it was: "What do they have you in here for?" My conversation was brief and focused on getting to know them enough to fill in my daily goal log book. My memory for names was terrible, so the focus was for just one each day. With each day as I "collected" my new friend, new miracles began to happen. It was beautiful and fascinating. Each person had their own story to tell. My limited experience at this "being a heart patient" thing often helped ease their own fears, just knowing that another had already been there and was sharing it with them. The stories went on day by day...

  ...there was fellow patient, Eddie - his cruise in a 200ft sailing yacht, a once in a lifetime opportunity he shared in detail and pictures, followed by my asking him his whole motivating life story followed by his offer to take me home in his RollsRoyce when I got my new heart wow! (PS: I turned him down, but promised to go for that ride with lunch some time in the future since my family would surely want to be the ones to give me that ride home after surgery...)

  ...there was the beautiful gospel singing, coming from an elderly grandmother's room, sung by her children my daughter and I stopped to listen in their doorway and apologized for the interruption, asking their permission to listen we continued our walk, IV pole on one arm, daughter on the other, tears in both our eyes at the beauty of the singing what a gift! What family love...

  ...there was the heart transplant recipient barely able to make it down the hall with her walker who ended up showing us all how to dance the electric slide and reversed her age at least 10 years before our eyes in the process all in response to our passing compliment on her pretty flower housecoat and question as to what she was going to do once she got out (after overcoming her heart rejection problem) she was going to her grandson's Bar Mitzvah, and the eyes lit up at the thought. Later we would get to meet her and her husband, both of whom, at the age of retirement, had found new careers as card dealers in the casinos of Atlantic City (she loved to play cards and talk to people now they trained her and paid her to do what she liked best anyway!!) and oh,how we danced...

  ...yarmulkas seemed to be on many visitors' heads all over the halls one week in the unit and, as luck would have it, the person they were coming to visit ended up in the room next to mine. As usual, I reached out to say "Hi!" Shortly I was asking if he was a rabbi, to which he responded by saying: "Some say that I am." What a beautiful man. On his final day I stopped by to ask if a rabbi had a blessing for a gentile. So wisely he replied: "We are all God's children. I will ask for His blessing of you in my daily prayers. Will you please do the same for me?" Of course...

  ...then there was lovely Mary, legally blind, 89 years young, who professed to loving to speak with people my kind of person. Stopping by later, after having just written a piece about our grandparents, Mike & Mary Gleason, for the family newsletter (another goal while I was waiting...), it came out that this Mary's maiden name had been "Gleason" and in the conversation that followed, for a while we thought her "uncle Mike Gleason" might be the same person as "my grandfather Gleason" "No!" I said, "My grandfather lived in north Jersey and worked on the railroad for the Penn RR "But so did my uncle Mike!" This was too good to be true and in fact it was they turned out to be two different people, but did we have some interesting moments. Later that evening I would return, just to say a few words of encouragement to my new friend (my goal for the day...). She looked so frail and scared I offered to hold her hand as I sat on the side of her bed (too weak to stand longer, I had to sit down). From out of nowhere in the dim light of that evening hospital room, I was moved to offer her my cheek to touch her cheek I don't know why, but this was a very special moment. She then asked if she could "read my face" with her fingers (being blind) "Of course!" And my hand took hers and guided it to my face the first time I had ever been "Brailled" tears filled my eyes as emotions flowed from this beautiful mother. Mary said: "I don't make it a habit to talk to strange men like this." I replied: "Mary, I don't make it a habit to sit on a lady's bed and offer her my cheek like this either!" We laughed softly together as I got up and left, promising to visit again before she went for a biopsy the next morning. Yes, Mary is now on the subscription list for the Gleason Gazette, our quarterly family newsletter, which I print out in large print on my home computer in our regular correspondence to her.

... and those are just some of the stories that came out of my living with this goal of meeting a new person each and every day what love and beauty came into my life each day.

• Goal: each day I would read at least 1 page of a book. Only one page, you ask? Yes, my goal was just 1 page and of course I couldn't limit it to that and eventually found myself with ten books in progress. Novels, medical support books, self-improvement ones, religious ones the variety making it possible to keep up with this goal even when the eyes started to blur from the medications and my ability to keep focused got shorter as attention span too suffered from the Rx's. (See my paper on recommended reading for the hospital patient for some ideas on great reading.)
• Goal: each day I would write one (short, if necessary) note to someone a thank you note for the fruit or flowers counted too. For the first two days I had written nothing. Now I forced myself to write to someone daily. This was made harder because of the shaking of my writing hand with those damn medications but it was easier some times of the days than others so I wrote more slowly during those best times (and worked to overcome the frustration). Not easy, but surely I could write just one note, right? The result? I got mail every day from people all over the world through my work, my family, from strangers who were praying for my success (Wow, was that emotional! strangers no less!!) One office group sent in a large poster with a get well wish on it signed by 10 people and I didn't know a single one of them! Pasted on the window at the foot of my bed, I can't tell you the emotional high as I woke each day and reread that poster strangers no more, I wrote them notes (of course...). PS: bright, colorful note paper and a fountain pen helped make this daily note writing a special event what a treat that pen was . . .
• Goal: to expand my medical knowledge every day through readings, conversations with other patients, professional staff, the doctors. They were all only too willing to share, and what a difference this made in my own attitude as a member of that team taking care of ME! After all, I was the only one on duty 24 hours a day, 7 days a week, with only 1 patient to take care of ME!
• Goal: daily exercise I had never been a person who exercised, but this was one of the few things they said I could do for myself to help improve my chances of success. I didn't feel like it! But with the help of two fellow patients awaiting their own heart transplants (we named ourselves: The 3 Heart BEATS Bodies Eagerly Awaiting Transplant Surgery), we got each other to join in the IV pole brigade each day, eventually setting a daily goal of 1 mile of walking! (see the monograph on Exercise for full details) Our common miracle was yet to come when John & Ron and I all got our new hearts the same week!!! (PS: yes, they are all doing well and we see each other at biopsy and clinic every so often) This was a major accomplishment that was to carry longterm rewards after we came home with the new heart and had to make exercise a daily regimen in order to protect the new heart. Naturally such activity is always kept within doctor's limits, but the important thing is to write down your exercise goal within such limits. The motivation from meeting this one is unbelievable (especially if your condition has prevented such exercise previously). Remember those many letters mentioned above? Well, they became part of a reward for exercise system. When mail arrived, I wouldn't allow myself to open them not until I had completed one lap around the floor (1/8th of a mile!) and then one letter could be opened another lap, another letter, and so on...

There were other goals relative to nutrition, taped letters to friends, weight reduction, selfcontrol of my medications (again, an important one in feeling like being in charge of one's self vs. being a passive patient), and the like and the days flew by. During the 4th week, one young intern came in to ask: "Mr. Gleason, how do you handle the boredom around here?" He was well intentioned, but I found myself responding: "Son, I'm here to have a heart transplant. Boredom is a choice I have within my control and I choose not to be bored. With these written set of 15 goals for each day I don't have enough time in the day certainly not time to get bored!" And that was the truth. I had undertaken the process the Japanese call "Kaizen!"(1% improvement each day for 100 days instead of trying to do 100% in 1 day) motivational selfimprovement guru, Anthony Robbins labels it CANI (Constant And Neverending Improvement) and these daily written set of goals (i.e., todo's) woke me up. It made no sense to count the passing days since there was no way of knowing how many days would pass before a heart could be found. After the surgery happened on October 19th, 1994, then I counted the days: 10 days to going home day yet another goal that had its own set of milestones attached.

I can honestly say the time flew by once I had found the secret. That secret was to set daily targets and they had to be written down each day and checked off each night. I felt good about the accomplishments and now, as this is being written 7 months posttransplant, I still keep up that daily regimen. With each passing day, I feel the success of accomplishment, the joy of having lived another day of my extended life to its fullest. Remember: "Kaizen!" "Life is good!" My daily prayers go with you and your loved ones that you too may soon be looking back with similar joy at your own rebirth and new found worth in life.

I hope this sharing will help you face your own challenge. It is my own way of thanking the many who helped me in so many ways. If you would like other monographs from this series, contact me through the transplant webmaster.

Sincerely and with HEARTfelt thanks,

Jim Gleason

Posted on TransWeb with permission of the author, James Gleason. All rights reserved.

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Last modified: 11 May 2000