Fear & Facing Death

A Transplant Patient's Experiences with Fear & Facing Death

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.

So What are You Afraid Of - Really?

It was biopsy day and I was visiting the cardiac care unit, hoping to pick up the spirits of some patients awaiting a heart transplant. "So how are you doing?" I asked a new patient. He didn't look very good - very apprehensive. "Not well." he responded. I searched for some way to help. It wasn't that long ago that I was in that same bed, feeling "not so good" and wondering what the future held in store for me.

Personal Facing Death Experience

My own experience involved a virus attack that left the heart muscle damaged (known as Cardiomyopathy) back two years ago. After treating it with medication successfully for that 2 year period, I had been hospitalized for congestive heart failure and pneumonia last spring, and sent home fully (?) recovered. By September it became obvious that more drastic measures would be needed if I was to live more than just a year or more. Thus it was that I found myself in the hands of the very capable University of PA heart transplant team. Was it fear that I felt when the cardiologist recommended that "I cease employment" and see the specialists about a transplant. No, I don't think so. With no real concern about leaving my job of 25 years with Unisys, a major computer firm, I just picked up the phone and said: "I quit!" How were we going to live without income after the transplant - surely I would never be able to return to work? Not a real concern - my focus was on the immediate problem - if I didn't live, the job issue wouldn't be a problem anyway. An understanding boss (and dear friend) explained that something called Short Term Disability would provide my regular income for the 1st 6 months, thereafter there was reduced income in the form of Long Term Disability. So much for the immediate future and income. Our insurance was a comprehensive plan, so the fear of having no money with a half-million dollar operation on the horizon didn't cause fear there either. From a life stand point, I had always been a strong religious person, and took advantage of the few days before entering the hospital for the indeterminable wait for a new heart by visiting with our parish priest and made my peace with God. I really didn't know if I would be coming out of this hospital alive. I had been forced to face death before in my life - finding myself in situations where I had no control and death seemed the only alternative. Obviously that was not the outcome, but I hadn't known that at the time, so the perception made it real. Having faced it before made this time easier. More importantly, I felt in good hands. If anyone could get me through this ordeal, the HUP transplant team certainly convinced me it was them. While they obviously couldn't promise the impossible, you knew they would do everything that could be done. I accepted my fate as being in His hands and committed myself to doing everything I could to stay alive, but it had been a great first 52 years, and if that was all I was going to get, fear was replaced by peaceful acceptance.

Initial medications boosted the weakened heart and I found myself feeling great again. So why was I in the hospital anyway? I understood that it was the special medications giving me a temporary boost. I understood that my life really was very limited. Several weeks of waiting and irregular heart rhythms caused concerns that I might not make it until a donor heart became available. A pacemaker was installed via a simple operation into my chest - really a very small and reassuring device that takes over signaling the heart to beat at its proper rate when the body fails to keep it up to a programmed level. Amazing technology - I found myself fascinated at the simplicity of the surgical procedure. And life continued as we waited past weeks 4, then 5, then... suddenly I found myself really feeling like a patient - weak, no energy, ready to sleep the days away. Doctors reacted with increased medications - but to no avail. After two days of this, I sat in the chair next to my hospital bed, thinking about all that was going on. Suddenly I realized that what it all meant was that this heart of mine was failing again - and the doctors weren't able to change that situation. Wow! What a realization? Confirming this insight with the transplant team, I came to realize how very concerned they were. I was still #3 on the regional list and there had been no donors for several weeks now. Fear? No, acceptance again. I told the team how much I appreciated all they had done and that if it was not to be, that must be His will, and I accepted that, prayerfully. No, I wasn't giving up, but there seemed to be nothing left for me (or anybody) to do.

The Final Test

That night I followed my usual prayers - for friends and family, each facing their own life threatening challenges - with prayers of acceptance (again). I felt like I was being tested - to see if I could really live up to the words I so often prayed and professed - acceptance of His will - up until now that had always been for the lives of others. Now it was my own, and my faith stood firm. I thanked Him for that great faith - modeled after my own father who had died of the same heart condition some 24 years ago, before the age when a heart transplant was even an option. I rolled over and found peace in sleep, just as I had for every other night in the hospital stay. Would I see the daylight? I really didn't know, but again, fear was not the response this time either.

The next morning, October 19th, I was awakened by the nurse with a message that there was a phone call at the nurse's station (how odd, since I had my room phone - forgetting that the hospital wouldn't put through a call to the room that early). Kathy, the transplant coordinator, announced the good news that they had come up with a heart - to start getting ready. See the Transplant Surgery article in this series for details of what followed next, but here I will confirm to you that everything that followed was so smooth and supported by my family/friends, i.e., the many nurses of the floor and their aides, that fear didn't enter into that picture here either. Anxiety? - I left that task to the family who had gathered for the vigil of waiting through the 7 hour surgery. I got to go off and follow the instructions of the surgery prep nurses who advised me that the meds would allow me to relax and drift off into a pleasant dream world - leaving them to take care of everything, include any worrying.

Back to the Original Story

As detailed in that other article, my next memory was after it was all over - feeling so good I didn't even realize they had performed the transplant (they had!). With all this experience behind me by 7 months now, I return to the patient's room where we began this story, looking for a way to help relieve some of his anxiety. I found myself asking: "Are you afraid?" "Yes." he replied. "Of what?" I asked him - "Dying, maybe?" I suggested. He agreed that was the case. I explained that I was going to die, as was the other patient standing by in this conversation, and if he didn't do so also, our new friend would be the first person to ever get out of this life alive - certainly a contradiction in terms, right? Deepak Chopra quotes life as be "a sexually transmitted, incurable disease!" Think about that and I think you will agree with him. Life is incurable, everyone dies (eventually). So we told him not to fear that, it was real. He had made peace with his own religious beliefs, so that wasn't the basis of his fear either. "Are you afraid of how you're going to die?" I continued. We agreed that there were many ways of dying that deserved to be feared - i.e., drowning, fire, etc. But I pointed out that being here in the hospital with a heart condition probably precluded those alternatives. Here he might want to worry about what might happen during the open heart surgery, right? Again I related my own comfortable feeling at the hands of the nursing staff here at HUP - if one was going to die, this was a pretty good way to do it - but I suggested he not count on it, they don't loose many here. Fear for what the family might undergo during the operation, while the patient himself is blissfully asleep in dreamland, that's OK to worry about, but that's not fear.

The Outcome

Did we alleviate any of his fear and anxiety with such sharing? I can't really tell you, but I hope we did. We found it very interesting to talk through the fear thing like this. Maybe we were just helping ourselves, who knows. I do hope that you find some consolation and solace in these reflections. Really, from someone who has been there and lived to tell this story, it's not all that bad. If you don't believe me, try any of those popular books relating patients' near death experiences. They tell a common story - and all describe a very beautiful, positive experience that many found themselves not wanted to return from. I've read 3 such books, and while I have no claim to such an experience myself (i.e., light at the end of the tunnel, floating around the room, etc.), they are very reassuring for those of us who haven't experienced them.

A Time/Space Experience

Personally, my own beliefs go along the line of Deepak Chopra's description where he says we are all spiritual beings in a temporary time/space experience. We existed before we were born - and will continue to exist beyond our death - as a spiritual being. Certainly nothing to fear in terms of dying into non-existence. A friend suggests that not knowing what the experience beyond this time/space thing will be like is a basis for their fear. Ok, that makes some sense. But, as an optimist, I tend to believe that that continuation as my spiritual self will be better than today.

Life is only this time/space experience that you and I perceive to be today. Today is that beautiful gift. What we do with that gift is up to us. Fear and worry, while a natural part of that human experience, really doesn't help extend that life time experience. So I choose not to do it. How about you?

To all those many family and friends who carried my burden of fear on their own shoulders - especially my wife, Jay, our children: Susan, Mary and Mike, my lifelong mother and nurse (who recently went off duty as a nurse, passed away from her time/space experience back to being a full spirit - without fear of passage), an extremely large and loving family, the many professional caretakers who became friends over this period of support, so many close lifelong friends - because you so worried about my heart - because you carried the fear in your own heart, I can write of this experience as one without fear. My recovery today is because of you. Thanks for carrying that part of the load - it makes my role so much easier. I offer my thanks and love to you all, all the way into that next century with this new and vibrant heart (H wave and all!) . . .

Sincerely and with HEARTfelt thanks, Jim Gleason

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