Potpourri

A Transplant Patient's Experiences with a Potpourri of Things that Happened

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.

Flower Watering & Lightning Bugs

Its a beautiful June evening, and as I water the summer flowers around our home, my childhood favorites, those flashes of lightning bugs in the night air bring back memories of when I used to chase them. Tonight, after just 7 months with a new heart, they bring to mind those many flashes of special gifts that have entered my life during these months of cardiac challenge. Most memories have been captured and categorized in the stories and monographs elsewhere in the series. In this final monograph in the 9-part series, miscellaneous memories are recalled and shared for your enjoyment and education. I certainly have enjoyed revisiting those memories for you. (Note: some may appear in other monographs and The Human Heart Story, but they do bear repeating)

"Amazing Grace"

My Mother, the Nurse. Her name was Grace, and she was "Amazing Grace" for the entire 79 years of her very full and active life, raising five beautiful children, 11 grandchildren, and 3 great-grandchildren, with two more on the way! This March 21st, mom was finally taken home, welcomed by a loving God, passing away suddenly, without pain, after a day of family and laughter. Our sister, Betsy, had accompanied mom to the local hospital where she received a blood transfusion to offset anemia. There her final hours were spent listening to taped Lake Wobegon stories told by Garrison Keillor, a favorite pastime that often left her in tears of laughter. Upon leaving, a blood clot stopped her heart, and thus, after more than 50 years of selfless nursing for others, at the age of 79, she finally "went off duty" and returned home joining dad, himself a victim of congestive heart failure back in 1970. As mom responded to the question as to how she was handling my heart transplant challenge, she pointed out that she had been through it all before, but then "we didn't have any alternatives" and thus saw my transplant as the miracle that it was - and we benefited from her wisdom in this regard.

Mom had always been a major supporter, especially of my years of writing for the Gleason Gazette where much of this story was first reported. When it came time to see the heart specialists, mom was right there with us, and even at the age of 79, picked up and left her own home to move down here and "did private duty" by sitting in my hospital room day after day. This provided yet another rare opportunity for mother and son to get to know each other even better, and how many get that chance so late in our lives? When I was discharged after surgery, mom moved into our home for the period I needed transport and close care. Immediate family had to return to their job responsibilities and certainly didn't feel comfortable leaving dad at home alone. We would do our exercise walks together. She would oversee my eating - and boy, did we have fights over that! Of course, she was right, but that didn't make it any easier for me. At the hospital, she had made instant friends with everyone and will be sorely missed by more people than we know.

Of the many things that changed in my new live, this relationship with mom was one that improved even further with age and closeness. Leaving us by Thanksgiving, she returned to help Jake with his own leukemia battle. Today, both Jake and mom are closer than ever to all of us, especially myself. Every day I look up to them for company and support, and as always before, they are there for us all.

Jake and An Impossible Offer

In the monograph on Support, I detailed the surprise visit Jake (my 26-year old nephew, fighting his own loosing battle with leukemia) paid to my hospital room while awaiting the availability of a donor heart and all that visit meant to me. Jake joined mom just before Easter this year after a valiant fight that the doctors gave up on several times. Jake and his loving wife, Maria, and the whole family, refused that option until God finally decided for them. What a model he gave to all of us in handling pain and the daily fight for life at all levels.

I clearly remember the phone call with Jake, when, in a voice that could barely be heard (he was so weak) he related his conversation with doctors up there in NJ in which he explored the possibilities of donating his heart to me in the event of his death. That was, according to those doctors, only days away back last October, but the doctors explained that with the leukemia, such donation would not be possible. What greater gift can anyone offer you? After finishing our call I just sat there and shook with tears of emotion. Months later I still fill up recalling the conversation and Jake's loving offer of life - his own for "uncle Jim!" Wow!! And this was just one of the many gifts that Jake freely gave everyone in the family, time and time again.

The Gift of Sight Through Another's Eyes

"Jim, you might want to stop by and visit the new patient just two rooms down. Her name is Mary," announced Mary, our mutual nurse. Of course I did, and what a beautiful experience that led to. Having just completed writing an article for our Gleason Gazette about my grandparents, Mike & Mary Gleason, it was amazing to find this very young 89 year old lady with a maiden name of "Mary Gleason." She introduced herself with: "I'm legally blind, but I love to talk to people!" So, being the shy person I'm not, we entered a friendship that continues to this day with a regular letter every couple of weeks.

Later that evening, I returned, just to say a few words of encouragement to my new found friend. Mary looked so small and frail. We talked in the darkness of her room - she didn't need the lights with her blindness. During the course of our conversation, I offered to hold her hand (it just seemed the natural thing to do) as I sat on the side of her bed (my heart too weak to stand longer). From out of nowhere I was moved to offer her my cheek to touch her beautifully soft cheek I don't know why I offered, but this was a very special moment. She said she would like that very much. As a son to a mother, I leaned over and ever so gently touched our cheeks together. She responded hesitantly by asking "May I . . ." and I finished her sentence "read my face with your fingers? Of course, Mary!" And my hand guided hers to my face the first time I had ever been "Brailled" tears filled my eyes as emotions flowed from this beautiful Mary Gleason - the namesake of my lovely grandmother who had passed away almost 40 years ago. To Mary's comment of: "You know, I don't make it a habit to talk to strange men like this," I found myself replying: "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.

Mary left that next day after a healthy verdict from her doctors, leaving me a name and address for sending copies of our Gleason Gazette. Imagine my horror when, several weeks later, I couldn't find that name and address. I searched everywhere, but it was not there. I began to wonder if there really had been such an encounter, or was it just a dream I had experienced. But it seemed so real. I had no choice but to disappoint her, that address was nowhere to be found. Still later, there it appeared, in the very spot where I had first looked, and today Mary has her subscription to the Gleason family newsletter. She and I write regular notes of encouragement to each other, even comparing goals. Her most recent was typical when it closed with an apology for not staying on the lines with her writing (this woman is legally blind, mind you...) and then encourages my letters with "I read a lot better than I write!" Don't worry Mary, I'll keep in touch. Thanks for your love and support. I only pray that I may someday be as young as you are. You are truly my model of "a Cookie Monster" (reference the writing about a Cookie Monster Club).

The Little Things

There are so many things that, while seemingly small, made a big difference in your daily regimen during that hospital wait. For example, you tend to loose track of time - i.e., what day is it today? Remember, even Saturday and Sunday, our usual demarkations for the end of a week and the start of a new one, run together while you lay waiting - waiting for an undetermined time - that's what makes it so long - you don't have that target date - the heart could show up today, or weeks from now. Someone would come in and mark off the day of the week on the calendar on the wall (in Phoenixville Hospital it was a posting of a new daily calendar page...). A simple task, but of so meaningful for the patient.

My family remarked often how very special they felt because the hospital receptionist knew them by name without having to look up my room number - and believe me, HUP is a big! multi-building facility with a lot of visitors every day. When I got my heart and was able to get around without a monitor, it was a special trip down to the front desk to meet this amazing woman - and to offer her my personal thanks for such beautiful supporting, friendly, family support. Yes, my family felt like the hospital staff was part of our own family. Now isn't that remarkable in this day and age of depersonalization. I offered my simple words of thank you and explained why, and how much it had meant to a very worried family to have that daily welcome on such a personal basis. She prayed (here come those wonderderful tears of joy again...) with me standing there at the reception desk. At her suggestion, together we offered thanks to a loving God the Father for this miracle. And later I prayed a private prayer of thanks for the gift that she was to that hospital and all its patients. Her name is Miss Pinknee and I'll never forget her kindness - and our prayers said together that day. If you're in HUP, be sure to stop by and meet her (on your way going home with your new heart, I hope). Isn't it amazing how such simple jobs can be done in such a special way? I'll have to remember that in my own daily "simple things" to do.

Then there's temperature. The hospital air is very well controlled - and maintained at a constant comfortable level. The problem is anything kept constant over a long period grows tiring. This was certainly true for the temperature of that room's air. I wanted so bad to just feel cold air - and it was right outside that hospital window - beautifully clear, fall air. I could open the lower slot in that window, but we were under a positive air pressure so that when opened, warm air went out, cold air did not come in. When it was time for a surgical procedure (i.e., biopsy, PACEMAKER insertion, etc.) you were rolled into a COLD surgical room where they apologized for the temp and especially the cold hands. No! - that was great (for me at least)! Any change was appreciated.

Music was yet another simple gift. I love music - of all kinds. Best investment we ever made was the purchase of a compact unit to play music in my room. Others shared in the joy of such music (don't worry, I kept the volume down so you had to be in the room to hear it). A small Walkman unit with earphones is another inexpensive gift that goes a long way in filling a patient's wait time - both for music and self-improvement tapes available in any book store these days, or even a book (especially useful if the patient doesn't have the energy to sit up and read - great for mentally escaping from the confines of that hospital room, too). The music can be soft or uplifting - I found the sound tracks from shows, like Phantom of the Opera, to be actually exciting. Really, even in the darkest of times, I could be hard to put up with, it was so uplifting.

Eddie's Balloon

In the story section of the piece on Motivation, you were introduced to my new friend Eddie, the one who took the once-in-a-lifetime cruise and offered me a ride home in his Rolls-Royce (his quote: "It's the only car to have!"). Well there's another unique memory I share with Eddie and his lovely wife, Barbara, involving a second stay he had in the hospital while I was still there. This time Eddie wasn't in our wing, rather he was in intensive care way down the hall, but on the same side of the building - we shared a common view of the courtyard - both from the 8th floor - but a dozen rooms apart. I had some Get Well balloons in my room, just itching for something more to do. Each day they hovered lower in the air as the helium gave out. My hospital window could only be opened a slight way with the lower panel, but with the balloon deflated enough I finally stuffed it outside, hoping the heat of the sunlight would cause it to expand and float out in the courtyard where Eddie & Barbara could see it! Farfetched you say? - Yes, it was, but there was nobody there to burst my bubble or catch me doing it, so the child in me went ahead with the impossible plan. Disappointedly, the brightly colored balloon sank down the wall, falling slowly floor after floor in the downdraft of the huge building to where I could barely see it. But wait! Just before getting to the ground level, the sun's rays started doing their magic and the sphere filled out and started to rise - and seemed to be moving in the direction of his room!. Excitedly I ran - OK, so I moved quickly with my IV pole in tow (heart patients don't run anywhere) - down to have Eddie and Barbara look out their window. But it was not to be - as I described to them the big hoped event, I realized how improbable it really was as I looked out their window view. Oh well, it was the thought, and Eddie appreciated that anyway. But wait, there it was!! Yes, the Get Well Eddie balloon drifted right past Eddie's 8th floor window for him to see from his intensive care bed - impossible - yet we both cheered as we saw it flash by for just that few seconds. I convinced him that it had imprinted on it: "Get Well Eddie!" - but I was making up the "Eddie" part - it wasn't written on the balloon, it was in my words and wishes. We had shared some special moments from our past lives together those brief days in the hospital, Eddie and I, but this one was ours alone. That reminds me, I have to give Eddie a call first thing in the morning to make a lunch date and accept his offer of a "ride in his Rolls-Royce." May you find your own Eddie & Barbara in the many opportunities for new friends presented each day of your hospital stay. And you think I'm positive in my outlook, wait until you meet Eddie!

(PS: Just made a date to join Eddy for lunch tomorrow at noon! It's a great world out there - so full of opportunities - grab for the brass ring as you ride on the musical carousel of life! Look out your window. See those two happy fellas riding by in the Rolles? That's us, enjoying life together.)

(PPS: It's two days later and Eddie and I did have that lunch together. Life is so good I just had to share it with you since you had followed the story up to this point...Eddie picked me up at the Unisys campus where I work - a beauty of a car: deep blue, a RR Silver Spur. Over lunch I proudly presented Eddie with the 1st copy of the final draft of the book you are now reading - color cover and all! He suggests I autograph it for him - Wow! - now I'm autographing my own book, neat! He insists I use his pen (as I sat there with my own Cross fountain pen - pretty fancy I thought...) and finally I accept. "Like the balance?" he asks. Then he points out the ruby on the top of the gold pen - custom designed in Europe - a $3,000 pen!!! Here I am, signing my first copy of my first book, a gift to a dear friend - with a $3,000 pen! What a life!! (Remember, we Cookie Monsters use a lot of exclamation marks!!) After a fun lunch together, Eddie explains that the deal was not to "just" give me a ride in his car - it was to drive it!?!! Wow, and DOUBLE-WOW!! Just imagine what it was like driving his $180,000, Rolls-Royce Silver Spur - well, your imagination didn't do it justice. You just thought a speed and the car was instantly doing that speed - no feeling/noise of acceleration - it just did it!

Eddie and I had a good time discussing things like taking advantage of the opportunities life has to offer each and every day that so many people don't even see, no less pick up when they do see them. Eddie and I pick up those feathers that float into our lives and do something with them (ala Forest Gump - if you haven't seen that movie, go rent it now...) - usually, like Eddie and his pen and his "motor car," we share them with others. "Eddie, in front of all this world of readers, I thank you for the gift of yourself that you share so freely." When I get this work actually published in book format, I asked Eddie to let me borrow his pen again so I could autograph copies for my friends - signed with a $3,000 ruby encrested, gold pen!! Go forth and search out your own "feathers" of opportunity that can indeed impact your life's destiny, just like this new heart has done for me.

Improving the Process (You can make a difference!)

Along with the usual visits by interns and doctors in residence that came by each day, I had the pleasure of one particular resident who, for whatever reason, hurt every time she checked the ankles for swelling. Over a very short period I found myself dreading her touch because I knew it would hurt. Finally one day I pointed this out to her. Her response: "Well that's the correct way to do it. You have to do it that hard to get the right diagnosis." I assured her that I would "help out" by pointing out to all the other doctors (i.e., the Director of the Transplant Program, Dr. Loh, Dr. Kelly, etc.) that they were all doing it wrong! Well, she didn't think that was really necessary. So, I reached down to see if I could duplicate her painful method. Sure enough, if I used the tip of my finger, the bony part, against the bone in the leg, I caused pain with even light pressure with bone pressing bone. If I used the finger sideways I could press all I wanted and get no pain! The finger padding eliminated the bone contact and prevented pain. She patiently listened as I demonstrated my "discovery" to her, and to her credit, she tried it this other way and agreed it meet her needs without causing the pain. We parted that day with a smile, this time the patient teaching the young doctor a new trick. From that day on, such checks remained painlessl, not only for me, but for all the other patients under her care. PS: No, she didn't keep quiet about it and I was soon ribbed by the rest of the doctors on the team for "teaching" the doctor. We all had a good laugh, but no more pain.

Similar opportunities were presented in other areas with equally successful results - especially in the area of drawing blood and installing those dreaded heplocs that needed changing every third day. Together we made this a virtually foolproof and painless process through visualization - both on the part of the nurse doing it as well as the patient too. Just remember, aqs the patient you are an active member of the team, not a victim.

Waltzing Matilda, Amazing Grace and the "3 Heart BEATS"

As detailed in the monograph on support, we formed a mutual support team among the 3 patients awaiting new hearts. John really gets the credit for suggesting that we name our group (and that resulted in BEATS: Bodies Eagerly Awaiting Transplant Surgery), and he also came up with the idea of giving names to our walking partners, those ever present IV poles that carried the bags of miracle medicine dripping into our arms 24 hours each day. When we did our exercise walks those poles on wheels were always in tow, so John thought we should give them a name. His he dubbed "Waltzing Matilda" while I thought hard to come up with naming it after my mother, the nurse whose name was Grace, "Amazing Grace." And thus our parade of the halls took on a festive air (Ron never figured out what to call his). John also came up with the idea of getting wigs for the IV polls, and while my sister donated her blond wig to Amazing Grace, John chickened out on his own idea, so that never caught on - but it was a neat idea, don't you think? Our beautiful nursing staff gave the "3 Heart BEATS" plenty of leeway in such antics, joining in the entertainment as told in the Support essay. There are so very many stories I could add about those beautiful supporting nurses, but I'll keep them for our own private memories - you'll no doubt have your own by the time that new heart comes in.

A Time of New Beginning

You have read all about Motivation and Boredom in another monograph, but let me re-enforce what an opportunity this waiting and subsequent recovery "sabbatical" was for me - and remind you that this is a choice you too have to face. I suggest that you take advantage of it as an opportunity and use it to your advantage.

With the possibility of a second life, you can ask yourself what you would want to do differently with this "second chance?" That's not the same as asking: "If I had my life to live over, what would I do differently?" although that isn't a bad question to ponder. This is more real. You are about to have a chance to live again. Quite a special thought! What are you going to do with this new life? In my case, I had the luxury of a set of written down values and associated goals I maintained to refresh in this new light. At all levels of my life - spiritual, relationships, health, career, etc. I could now write new and updated goals - dreams that now had a possibility of becoming real through this miracle of a transplant. It was time to sit back and talk to my God about "our" relationship. The same was done with family with new directions being set. We could outgrow some bad habits I had formed over these past 51 years and move on into a new sunlight in our love together. It was an exciting and beautiful time. Please (and I cry as I write this to you because it is so very emotional), don't miss this opportunity. Think about it deeply. Think about it together - you and your God, your spouse, your children, your family and beyond. It is a new you and you do have a say in that life's destiny. Stand up and take control - make that difference - and say a little prayer for me while you're at it - that I live up to the ideals and goals I wrote down during this period of re-creation (see the article on When WORK is Not WORK).

Lucky Room 865

That last room down the hall - the one way back out of the way - sort of lost down there - we noticed was a "special" room. That was room 865 on Founders (a building name in this sprawling complex). It was a lucky room! Everyone who got assigned to that room went home with far less of a medical problem than they thought they had upon admission. A heart attack became an anemia - "take iron pills and go home!" - such a beautiful prescription when you were anticipating an angioplasty. Another went home early - again without surgery - because they found some simple root to the problem. The one that forced it all out into the open was the night a fourth patient was added to the heart waiting list - at 5pm on a Friday night. We three heart BEATS, all who had been waiting for too many weeks already, planned to go down and welcome this newcomer first thing in the morning.

Imagine our surprise when we found the room empty! They had found a match for him through the night - he was already in surgery getting his new heart!! We had to wait until several days later to go up and meet him in recovery - and to say "Good bye" before we really had a chance to say "Welcome!" Imagine my own feelings when I had to be readmitted - transported by ambulance of all things - back into HUP for treatment of a racing heartbeat (called SVT's) and our floor secretary, my good friend Marie, announced to the ambulance transporters that I was to be taken to room 865! The "lucky room" and it turned out to be lucky for me too. Just a day later, a simple procedure by the heart cath team and I was beating at my normal 84 beats per minute again, then sent home - "piece of cake!" If you can, get assigned to room 865, Founders - and, "Good Luck!"

The Mountain of Fruit

Shortly after entering the hospital, there was delivered a fruit basket to top all fruit baskets - it was literally a "mountain of fruit" - from friends at Unisys (where I worked). Kathy, our "super-cheerleader secretary" had organized the project and the enclosed card was signed by over 78 friends - from the chairman right down to the cafeteria workers. What a mental lift that mountain gave - such thoughtfulness. The fruit was a delight and I made a real picnic out of it every day - especially enjoying those oranges. With my restricted diet, there seemed to be so little tasteful food allowed. Oranges were both tasty and allowed. I would store one away in the patient refrigerator and later "treat" myself to its cold juiciness - delightful!! Oranges became a mainstay of my diet and I strongly recommend them if you are so inclined. How many times I reread that thoughtful card and "visited" with all those friends again and again. Mail is so important to the long term patient. People tend to mail for that first week, but then drop off. That's when it counts the most - week after week. Make it your own goal to send at least a note per week, and continue it after they return home. Cards are nice - but the personal note written inside - or the note inserted with the card - or a letter itself - Wow! Now that's special.

Daily Spiritual Support

As I have explained over and over again (so it must have been important, right?), a lot of my own strength comes from a strong faith in a loving God. This was supported by the beautiful nuns, priests and eucharistic ministers who came every day and gave spiritual counsel and communion. We quickly became close friends and I looked forward to that daily prayer together. The Sacrament of the Sick was administered by my local pastor before entering the hospital, while the hospital chaplain renewed it again when things got real tentative. This was very reassuring and made for a peaceful acceptance of anything that might come to pass.

An outgrowth of these spiritual visits and meeting so many new friends in need of prayerful support, was a personal commitment to include them in my own daily prayers. Recall my story of the Rabbi in the next room who promised to keep me, a Gentile (my words), in his daily prayers, while I agreed to do the same for him in mine. Each evening I recited that very Catholic prayer, The Rosary, but with my own creative twist. The Rosary consists of 5 sets of 10 repetitive prayers, with each "decade" focused on some meditation. This rosary I called My Healing Rosary, and in it I prayed each night with the following intentions:

1st Decade : for the many patients that God is challenging (i.e., Jake, Ceil, Lale, Chuck, my fellow heart patients here, and so many more)
2nd Decade: for the family and friends of those so challenged
3rd Decade: for the many supporters, especially the professional medical staffs, that they might do their very best for such patients, and come back with new strength and love each day
4th Decade: for strength in my own personal role, first as a patient myself, and secondly, as a supporter of others around me, including my own family and friends as they try to bear up under the weight of this unknown, compounded by such a fear of possible loss
5th Decade: finally, for acceptance of God's will, whatever it may be, for me, for my fellow patients

Those prayers continue to this day, especially prayers of thanks for my continued success and the many gifts of His in supporters like you and so many others. Today my prayers go out for you, especially. I found it so very uplifting to find such an army of strangers including me in their daily prayers. I hope that you find this to be the same for you too.

A New Wardrobe for the New Heart

As described in the Weight Changes article, I had changed dramatically in my dimensions (a total of approximately 70 pounds less!) by the time I was to leave the hospital after the transplant. My daughter Mary, thoughtfully took advantage of the opportunity to "redesign" her drab old dad by buying a gift for me of a whole new wardrobe. Modern slacks, belts and shirts to match, were bought for each day of the week. This was home (actually hospital) shopping at its very best. Mary did the shopping, brought it to my room, and I got to try things on and do the modeling. She did the exchanges and shopped some more - something she is very good at. For someone who was feeling like a new man with this new "young heart" (I know I've told you its the heart of a 20-year old, so I wouldn't repeat that here!), what more thoughtful gift. I joyfully paraded before my wife, Jay, and the evening shift of nurses - nurses who knew me as the weakened patient of pre-transplant days. Do I have to tell you how very supportive they all were? This was the "new" Mr. G, and a better morale booster couldn't have been given. Talk about motivation to go home. "Heal body, heal!" And just several days later I did indeed strut proudly onto that elevator and out the front doors in my finery, with a new heart beating strongly. "Thank you, Mary!"

It Was Time...

The heart arrived, surgery transferred it into me, and each following day saw its own unique recovery milestones (i.e., surgical staples removed from the chest opening - and yes, of course I asked to have some to take home as souvenirs - tubes removed, renal and intestinal functions finally coming back on-line - just in time to avoid the dreaded enema, etc.) It was surprising to me how strong the realization became when the day finally arrived when there were no more such milestones. All of a sudden I knew it was time - time to leave the safety of the hospital and the comfort of the daily support of the transplant team - it was a sudden awakening, as clear as if a bell had gone off. There is a natural cockiness that comes from the medications at this point, but this was not that. I knew my limitations, but I very sure that it was time to move on to the next phase of recovery - at home.

Every day the doctors did their rounds and came in to visit. This day it was I who walked out to meet them on the other side of the nurses station to ask that we have a meeting. The patient was calling for this meeting. This was different. My team of doctors was great! They saw this as the welcome sign for which it was and tolerated my enthusiasm, agreeing to come to "my office" for the gathering. "Yes, Mr. Gleason, what is it?" I explained the process of daily milestones and how they had all been met. I reiterated the daily blood test readings and how those goals also had been met. But more than that, I explained that I was offering them the input their tests could not capture in those printouts. My body was telling me "it was time!" Dr. Loh listened openly. I made sure he knew that I accepted his wisdom and responsibility and would stay "as long as he asked, given that there were things to accomplish here." "You have all done a magnificent job," I continued, " but all that's left for me here is to catch something. Let's not screw it up now. We've come too far." We negotiated and I accepted his willingness to target for Saturday morning - subject to anything changing, of course, in my tests.

In summary, Saturday came, and so did Dr. Loh. He agreed we had meet all our goals and in the shortest meeting of our many days together, announced I could go home. Within 30 seconds Jay was called and she and Mike were on their way to pick up dad for the long awaited trip home, where yet another adventure would unfold. My prayers are that you too may have a doctor as professional and understanding as my Dr. Loh (and Dr. Kelly, Kathy, Heather, etc.)

The Homecoming

Outside the hospital that final day, there stood my son, Michael, transformed into a chauffeur, with his new, shining black '95 Maxima - a regal limo if ever I saw one. He proudly held the doors for Jay and I as we climbed, king and queen for the day, into the back seat, for a tour of the beautiful fall roadways back to our suburban home. The side windows powered up and down, again and again, as I drank in the cool, clear fall air - a welcome relief after 6+ weeks of closed hospital room air. The fall colors were so vibrant! I can't imagine how that must feel to people who are confined for so many months (and years) more than my mere 6+ weeks, but I'll try to keep that just to my imagination, not actual experience, thank you.

Arriving home, we found the house decorated outside and in with cheerful balloons and bright banners of welcome. Mary had outdone herself with a festive welcome home theme that was tearfully overwhelming. It had been so long that once inside, I found myself looking at our home as if for the first time. I couldn't even remember which cabinet held the glasses for a drink of water! (side effect of the meds, right?) But who wanted to be inside on such a beautiful fall day. Mary and I went for a walk, very slowly, stopping to marvel as the little things so unnoticed in our everyday lives - the "green, green grass," the movement of a grasshopper crossing our path, the lucky ladybug just beyond, and the trees - how magnificent. Mary was scared - what if dad had a problem and fell down there? How would she handle that? But she went for that walk with me anyway - a very brave and loving act as she realized that this was something they all had to come to grips with.

As described before, for me it was like being born again and seeing things for the very first time - only, unlike the baby, I had the gifts of mobility and communication to explore and share the experience, and share I did - they couldn't shut me up. What love it must have taken for the family to endure that enthusiasm, day after day - such a beautiful and loving family. What a fantastic welcome home! I pray that each of you enjoy the same love and support welcoming you home with your own new heart.

Returning to Work

Another major milestone in the recovery process was finally returning to work. Everything seemed to work out so perfectly. Having left work early September (with no hope of ever returning - how would one ever work after a heart transplant, I thought - today I see that as just lack of education on my part), my 6 months of short term disability would run out early March. So, an informal target was implied there. As it was, with the transplant on Oct. 19th, 10 days later the goal of being home was met. The next step would be a rehabilitation program to build back up the body through exercise, but you're not ready for that when you first come home - that takes 30 days or so. Naturally the local hospital's cardiac rehab program which runs for 3 months and then restarts again, had the next iteration scheduled for December 1st, just enough time for me to get ready for it. Now count off the 3 months of that program and where does that put you? Yes, right at the beginning of March - see what I mean? At the end of that rehab program I was walking 6 miles a day and busy writing and reading a full business day, so I did feel ready. The only problem (?): I had 30 days vacation time to use up from last year yet (not to mention that the vacation time had continued to accrue while I was on disability, so I had another 25 days for the year that starts in April...). Everyone recommended coming back to work only 1/2 days - and using the vacation time for the other 1/2, that would take almost 3 months to use up just the past vacation!

Anyway, excitedly I returned to my support job at Unisys and had the most beautiful welcome one could hope for. What a family that company is - especially the 2500 workers at the Blue Bell, PA campus where I am based. Walking in the doors the posters were everywhere! Posters in color with my face pasted all over a scene with me lying in a hammock in the background - titled: Bouncing Back! Screen savers on the help desk PC's (a group I had managed before my sabbatical) had been updated several times with photos of my recovery ("Thanks Terrance!"). Kathy had arranged a big sheet cake and everyone in our group gathered for the celebration (another tearful moment - and again my eyes fill up today as I revisit that scene in this writing). A full size Power Ranger figure stood in my office (Marcy had talked a local shop out of that one!). To this day, some 3-1/2 months later, people still stop me in the halls and express their amazement at the fact that I seem to be so healthy with this new heart: "Wow, you have someone's else's heart inside you! That's amazing!" I couldn't agree more with them. And with each such reaction, the energy flows through this steroid laden body. Getting back to work was a major boost to the recovery process and I highly recommend it to everyone - just don't rush it. Having an understanding management team above me helped a lot in not being overloaded with work on that initial month back - they too were a real blessing I wish I could share with all of you.

Work has always been a blessing to me (see the When WORK in Not WORK article in Section 3) and the challenge of constantly growing with new learning helps to keep the spirit young. Needless to day, my immediate family has been very concerned with this return to full employment, but they kept that concern in a very supportive, not restrictive, level. One point about the 1/2 days - that really didn't work out. It just took too much out of each day to get ready and then commute the 1/2 hour each way to make it worth while. Management had suggested working the afternoon so that I wouldn't overstay my 1/2 days - a trap easy to fall into if you come in the morning and get involved in something that will keep you into the afternoon. Slowly it evolved into taking Tuesdays and Fridays off to use up that vacation, but that too gets tougher to stick to once you get re-involved. After all, the job isn't a part time job.

The Bill

One last trivia experience to share, and this is a financial one. Early on, someone gave us some good advice. They said don't pay any bills. Sounded good to me. Their point was, don't complicate the healing process with concern about a deluge of incomprehensible bills. In our case this turned out to be good advice because, just when you can least handle such an issue, they did start coming in, and they certainly didn't provide enough detail to make any sense out of them. We filed them - in one big file! Now, in all honesty, our insurance was comprehensive and did pay most of them directly without any effort on our part, so it isn't as irresponsible as it may sound at first. Just recently, i.e., six months after being released from the hospital, we got a collection notice - for $40? I couldn't find what that was for, but in the interests of avoiding big problems, for the mere $40 I paid it. Compared to the roughly $500,000 in bills that passed our hands into that big file, this was just too small to get into trouble about, I figured. A couple of days later, we finally faced the inevitable and sorted out the bills and insurance statements to see what we really owed. In summary, it was a pleasant surprise to see that everything (except telephone charges, of course) except our new year deductibles had been covered and paid for - except for that $40 item. Turns out it had been carried outstanding for many months. That bugged me - I didn't mind paying for it, but I did want to understand it. By 2am in the morning I found it - a hospital billing error! Out of all that, the only thing I pay and it turns out to be their error! We are in the process of clearing that up and getting our $40 back, but it was just so ironic, I have added it to my long list of transplant experiences. May your biggest problem be a $40 billing mix-up and nothing more.

The Quest

With a new heart came a question of meaning. You find that your life has been given a second chance - actually a second life. Why? My answers have come in several forms. First and foremost is to be here for my family, especially for this next generation. Our daughter Susan and her husband Chris are expecting our first grandchild next month, i.e., July (9 months since my transplant?) - and that is a moment I almost missed.

Secondly, I feel driven to express myself in writing about these heart transplant experiences in a form that can be of help to others, like yourself. If you are a patient, it is my hope that you will find peace in knowing what it was like for another to have been there before you. Your own experiences may be different, but by reducing your own fears through sharing my experiences, I can help you handle the whole transplant experience in a way that will make that experience better, and thus speed along your recovery with less complications. If you are a supporter of such a patient, either as family, friends, or some form of professional support, you can use these writings to help the patient as I indicated above, or, you can better understand your own patient/loved one by living through what another similar patient has gone through. By anticipating some of these events you can be better prepared to handle them if/when they happen to your patient.

Lastly, I am being given the opportunity to return to one of my first loves: teaching. This fall I will conduct a six week workshop at Ursinus College entitled: Personal Success Through Goal Dynamics. A lot of my learning through this heart episode strengthened an already firm conviction about setting goals and the resultant success. My Motivation & Boredom monograph gives you some of the idea, but there is so much more. Anyway, this workshop is my other way of saying "Thanks!" to each and every one of the many supporters I had.

In closing, keep in mind that I pray for you every day, that you too will have such a beautiful success story to tell still others that will follow in our steps. Meanwhile, please say a little prayer for me...

Sincerely and with HEARTfelt thanks,

Jim Gleason