Transplant Surgery

A Transplant Patient's Experiences with Transplant Surgery

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.

Finally, after two years of deteriorating heart function at home, 5 weeks of hospitalization awaiting availability of a donor heart, the critical moment had arrived: the transplant surgery itself. The anticipation, feelings before, during and after actual surgery, and experiences with the surgical process are the subject of this article.

Summary

In summary, as a patient I felt I had the easiest role, while the supporting family members, especially my wife, carried the heaviest burden. I had the direct input from the patient at all times (i.e., myself) while everyone else had to settle for second-hand information. My personal experience was totally painless - or at least the pain was so minor (especially in contrast with many other types of open heart and organ transplant surgery) that I was able to count my minor pains as blessings, not serious problems. Even the toughest moments - i.e., the actual surgery, the awesome view of so many tubes supporting my body after surgery - were shielded from me by modern anesthesia and its after effects. Family and others did not have this advantage. So from my vantage point, the patient has the best role, mostly thanks to so many other support people from family, friends, nurses, and doctors. Let me share the experiences that let me say that from the perspective of 7 months post surgery with a healthy new heart - as I have so often noted in these writings, a 20 year old (young!) heart in this 52 year old (young!!) body.

Waiting for Surgery...

From our first visit with the HUP cardiac transplant team, the confidence level conveyed allowed me to accept without concern the anticipated surgery. Death was an accepted alternative if we didn't go ahead with this transplant, so fear of dying under surgery was not a factor. Actually, the possibility of dying while waiting for a heart to become available was the higher risk. I had accepted these risks and made peace with my religious convictions before coming into the hospital - an approach I strongly recommend for every patient. Putting fear aside like this, allowed the patient to focus the body's energy on healing and conditioning, getting ready for the anticipated surgery. In the hospital there were 3 awaiting heart transplants (known as the "3 Heart BEATS" - Bodies Eagerly Awaiting Transplant Surgery), and we learned from the open sharing of experiences within this team that it was not unusual to have "false starts" - situations when an anticipated donor heart did not pass the final tests for viability - but the patient underwent various stages of preparation, even up to being delivered into the surgical area for prep. Needless to say, this could be a tremendous emotional letdown for the patient, one that often took multiple days to bounce back from. Over time as this was seen multiple times, we took this possibility into account when the availability of a donor heart was announced, expectations certainly rose, but were tempered by this "false start" possibility.

In my own case, the addition of a PACEMAKER controlled the arrhythmia's, but as the fifth week of waiting passed, the old heart began to fail beyond where medications could help and time was finally running out. A heart had to be found quickly. My acceptance was tested and my response was prayer and a good night's sleep. Over the past 3 weeks my position on the waiting list for that type of heart had not improved - i.e., no hearts had become available. My prayer was one of thanks for a great life of 51 years - to date. The next morning, 7am, the call came in - a heart had been found - expect transplant surgery within 5 hours. Immediately my wife, Jay, and I found ourselves in tears of joy (repeated with tears in my eyes even as I recall the event and record it here) as the news spread within the family. This excitement was tempered by the "false start" experiences we had seen, but excited we were! Our 3 kids (all in their 20's) joined Jay and I, in the vigil, as the patient was shaved (of all chest hair using a NAIR type cream) and showered with antibacterial soap. Hurry up and wait - excitement and caution - as we counted the hours and minutes til they came to wheel my bed down to surgery - all the while waiting for the last minute "wave off" if it was a "false start."

With tears (here they come again as I recall this moment) and kisses of well wishing by family - nurses (turned dear close friends over the passing weeks...) offered words of encouragement - and the transport surgical staff arrived. How to describe the feelings of that moment? You had to be there to understand - it was very emotional for everyone. As the patient, I did not feel any fear, only hope and comfort, a real compliment to the hospital teams involved. With confidence that I was in good hands, it was easy to look forward to the next step in this great adventure. The burden of fear was undertaken by the family left behind as doors closed on the elevator. That burden is a tough one - so much time without any real information - while I carried on friendly conversation with surgical nurses who calmly described how I would be relaxing as medications took effect and transitioned me into the sleep world of anesthesia - a most pleasant relaxation, I can assure you. As a patient, I felt and knew nothing of the next 24 hours. All prior concerns of the waking up after surgery to find arms restrained (to prevent pulling out life supporting tubes) and voice blocked by a tube down the throat (they had assured me that a note pad would be available to allow communications...) were unfounded. Here's what I actually experienced.

Coming Out of the Transplant Surgery

Awaking to a nurse working with me in a windowless room - clock on the wall indicating it was 6 - based on having gone up for surgery at 1 in the afternoon and my feeling so good, this must have been a false start (I knew the operation takes up to 10 hours). My arms are were not restrained. The nurse assured me that the tube would come out of my throat very shortly (not the hours of discomfort I had anticipated). With the pad I asked her why I felt a tightness in my chest when taking a deep breath. She responded that that was a result of my transplant surgery. ("How could I be feeling so good - no pain - obviously a 'false start' I assumed"). Note quickly written and passed to her: "FALSE START?" to which she replied in surprise: "Didn't they tell you? You have a new heart!" (Wow, the tears come yet again to my eyes writing these words - a very emotional moment in which I was suddenly realizing this was a new lease on life!) My mind raced for explanation - the clock - the lack of pain - feeling so good - how could this be? Oh, the clock was actually showing 6AM (the next morning after the day of surgery, not 6pm the same day as I had assumed...). I had been told of the transplant - family later assured me - at my first waking the evening before - an awakening that was erased in my memory by the effects of the anesthesia, along with another of its side effects which is to make you feel good (neat stuff!). What little fears I had had as explained earlier, proved unfounded. Again, family had taken on the burden of the sight of me returning with all those tubes, etc. Their memories will not be erased - mine were, forgivingly so. "How do you feel, Mr. Gleason?" support professionals asked - now with my tube removed, I could respond in amazement: "Wow, wonderful!" Its like someone had opened up the window to the cool, fresh fall air - such a change from the constant temperature of the past weeks of closed hospital air. I was feeling so good - immediately. Everyone explained away the feeling with "that will pass as the effects of the anesthesia wear off" - well, I'm here to tell you, they didn't. Each day got better than the one before it. Again, this is just one person's experience, but I do hope that you have the same experience if you are a patient reading this. Family again came in to visit - this time I can remember it (i.e., their 2nd visit, this time after they had gotten a night of restless sleep, but some rest, nevertheless). What a beautiful sight (still more tears as I recall that vision of love) - smiles - gentle kisses of love and support - dad had made it! Wow, what a miracle! Again, I sailed through without really being there - they had to live through the whole uncertainty - my confidence never doubted the outcome - they had carried that burden for me. "Thanks Jay! Thanks kids!!"

After Surgery

The 3 Heart BEATS had shared a supportive well wishing. Ron, after a 9 week wait, had received his heart only 3 days before - we had sent him to surgery with the directive to hold a place for John and I when he got up there. As I was being wheeled out, I assured John I would warm up the recovery bed for him. Within the 2nd day in intensive care, I was told they needed my bed - John's heart had been found and he would be down in this same bed within the day! John had waited 7 weeks in the hospital (plus 2 years at home). The 3 Heart BEATS all got hearts the same week - WOW!! Talk about your miracles. (PS: as of this writing, 7 months later, the 3 Heart BEATS are still alive and doing well, and yes, we do keep in touch). By the end of that first day (am I exaggerating? I don't think so..) I was sitting up in bed, and out of bed (making room for John?) by the next day. Looking down my chest, there were staples (yes, metal staples!) where I had expected sutures. I was now a member of the special and infamous "zipper club" (the staples leave a chest pattern that look like a zipper from the open heart surgery). I think they should have a special pattern for heart transplant patients (vs. that for other open heart procedures such as valve and bypass surgery) - after all, we're awesome, right?

Reflections and Recovery

Once out of intensive care, my answers to the daily question of how are you doing continued to be "Great!" "Humm..." they would say, "that should be wearing off by now." Thank God, it didn't. That feeling was - and continues to be - great!

I clearly remember the chief surgeon, Dr. Ackers, coming into my room a couple days after the surgery and resting back into the chair next to my bed. He shared his feelings with the following exchange: "Mr. Gleason, I held your (old) heart in my hands (Wow, just imagine that!) and I can tell you, there is no way it could have supported your active life style! It was so damaged - left than 15% capacity left - a real testament to the human spirit that you could keep up with all you were doing!" Talk about emotions! Let me just close with an emotional "Thank you!" to everyone involved in making it possible to share the experience in this writing - i.e, in helping to get me over to this extended new life I now live. No more caring and loving professionals could ever have been found. They really became "family" and in my life that term is very special, because I am blessed with a very large and loving family. If you are awaiting your own heart operation, I pray that your story will be just as positive an experience. God be with you. Sincerely and with HEARTfelt thanks, Jim Gleason

Speaking of Thanks...

From the heart of a recipient to my donor's loved ones

Words seem so inadequate to express what we feel - gratitude, exhilaration, humility. Please accept our heartfelt and prayerful thanks for your generous gift of new life. It takes a very special person and family to give so unselfishly at such a time. While our family had been passively supportive about organ donation, your example and this experience certainly has changed that. Through offering ourselves as organ donors, we have all committed to passing on your gift of life to yet others multiplying it like ripples in a lake. You'll never know the full impact of your generosity. You have been a key part in the making of God's miracle. We had reached that critical stage where my heart had nothing left and now I am reborn! It is fantastic!! To date the doctors have seen nothing of the expected rejections. This must have been just the right body to allow your gift to live on. I wish we could share all the experience from this end, but let me just describe it as being re-born - not as a helpless baby - but with all of life's prior experience and the ability to express the wonders of that baby's excitement at each new discovery. Each and every day is yet another miracle and I offer a prayer of thanks for you all. Now, nothing is taken for granted. The simplest things are new and exciting - the green of grass, the grasshopper crossing my path, a ladybug, the sunset, a moon . . . You have given me the gift of a new life and I find myself prayerfully searching for the "Why?" of it all. What special purpose must God have for me in granting this miracle of a second life? I'm still searching . .. I guess the simplest words are still the best. At times of crisis, my prayer was "Help!". In this exhilaration, to you and to Him, I say simply, from the very bottom of my heart :"Thank you!" Your very grateful heart recipient.