Last modified: 11 May 2000
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.
Family Background
The support system of a patient's family and friends can be a critical asset toward survival and recovery through these challenging times. In my own case some background information may help the reader to understand the points that follow. We are a traditional family, a stable marriage of 30 years with my wife, Jay (herself employed full time), and our three adult children: Susan (married and living in Chicago), Mary (working locally and living at home), and Michael (recent college graduate, working locally and living at home). Our home is, very fortunately we realized in looking at others in the transplant program, about 40 minutes from the University of PA Medical Center, base for our transplant support. We met many others for whom this was a major travel problem and this in turn impacts the availability of family support visits. Beyond such immediate family, we enjoy a large and active support network of family - and in spite of their own demanding medical challenges - they kept ongoing contact via visits, letters, cards, taped letters, phone calls that made me feel constantly a part of their on going lives despite being isolated physically in a hospital room several hours distant. My 77 year young mother, a nurse of 50 years experience, added a very special support by temporarily moving in with our family here in PA. Somehow she got down to the hospital every day and did "private duty" seeing me through the ordeal, and then joined us at home for the first month of returning home after the transplant surgery. This was especially helpful in light of the family's working responsibilities and restrictions my driving.
Network Expands
Beyond this extensive family network, the numbers of friends (personal, neighbors, work related, and unknown) were staggering - a factor that helped a lot to keep my mind success focused, looking toward a bright future. This is critical when you are facing the threat of death with each passing day and week. I had expected the usual initial flow of well-wishes when entering the hospital in mid-September. What did surprise me was that this mail and communication never stopped! Five weeks into the hospital waiting period, daily mail still exceeded in volume the entire volume of mail for the remainder of the 22 bed floor - I felt sorry for those other patients, and very blessed with my own support system.
"But really, what can I do . . ."
Most of that mail came from family and friends who got past that very natural reaction of: "but I don't know what to say . . ." and somehow dropped that card, or short note, or long letter of support that enlivened each day in what could have been a very dull environment. My point is that as a friend or family, anything is better than nothing. It means a lot to know that people are thinking about the patient - a very significant uplifting medication after the first week of confinement - especially in light of the unique nature of this waiting, i.e., you have no defined period for that donor heart to become available. This is a tough challenge your transplant patient faces every day - you don't know how long it is to the end of that tunnel.
You don't know how many more days of this waiting remain before a donor will be found - an uncertainty that adds to the already difficult challenge. Those daily mail calls fill in that void beautifully, so write and write often. If you're looking for something to say, try "We were thinking of you today" (simple enough) and then attach one of these monographs or a part of the Heart to Heart story itself. This material is purposely broken into small pieces to allow selection of material appropriate to the particular situation that patient is facing today and would allow for up to 11 weeks of 3 letters per week without any real creativity on the part of the writer. Anyone who undertook that support mailing program would be forever remembered by everyone involved as an outstanding support friend! Just imagine yourself on the receiving end of that love and support - exciting, isn't it? As one who did receive such volume, I was excited and often shared the joy with visitors and family, both during the ordeal and even through today (7 months later). This support, in turn, affords the patient challenge/opportunity to respond to such family and friends in notes and letters - an activity that not only fills one's days, but also takes your mind off the focus on your internal self (you would be amazed at the number of symptoms that our body handles in stride each day without our attention, that when you have nothing but time to focus on them, they become major concerns), something that is an important move in the right direction of interest in helping others.
Support of Special Note
From my work environment there appeared a "cheerleader" in the form of our organization's secretary, Kathy. She somehow found a way to keep everyone updated on my ongoing condition, solicited card signatures from far and wide, organized the biggest fruit basket mountain that I had ever seen. If there was one person who kept the interest high resulting in that ongoing volume of mail, it was her. The card with that basket contained 78 (yes, I counted them!) signatures and well wishes from the cafeteria workers up to the chairman of our 50,000 employee world-wide company. You have to receive such a gift to appreciate the uplift that can give a patient along with its positive impact on the waiting/healing process. "Thank you, Kathy - and to everyone on "your cheering squad" who made my life so special for all those months!"
What can family do when they visit to be meaningful when the visits go on for so many weeks? My daughter, Mary, and wife, Jay, gave the daily gift of foot or back massages. Wow, so special and it made me feel energized and good! As a patient I looked forward to that daily physical contact more than you can imagine. Take that as input and design your own personal gift of self - keeping in mind that some are so ticklish that you could never massage their feet! How about a facial treatment? or maybe a finger massage. As weeks passed by and my hair grew longer, it was a real uplifting treat when the kids enlisted the aid of their hairdresser to come down to the hospital and cut it - talk about feeling special. My overall message is to look at your own individual talents to design that special gift like the people above did for me.
Then there were the cards from the other side of the world: Australia and Hawaii. Friends I would never have thought would even be aware of my situation, no less take the time to communicate. I was amazed and shared the excitement with anyone who would listen. What an uplift!
Jay's daily visits and rotation visits by our kids (I told them to live life as normal as possible, I had no idea how long the situation would continue, but it was forecasted that 6 weeks was typical for the type of heart I was waiting for...), went a long way to ease the loneliness so often seen in other patient's rooms. Again my response was prayers of thanksgiving for the blessing of family. This supposedly simple gift of family visits was far from simple as you keep in mind the ongoing full-time working responsibilities of that family and the difficulty of city expressway driving by a wife who feared that travel - but somehow they shared the challenge and gave the gift of self day after day. I'm still amazed at Jay's (as least temporary) overcoming of that driving fear in the name of selfless love.
It's hard to quantify the effects on the patient's progress, but the transplant team has noted that the biggest successes seem to come with patients that have such a support system behind them. Susan and her husband came in for an extended visit from Chicago - talk about your long commute! Their daily sitting and sharing with a dad who might not be around when they returned again from Chicago was another example of a gift of self that could only uniquely be given by them. Their concern was not obvious, but a natural one. Instead of focusing on that possibility, we took slow exercise walks (IV pole in tow) around the hospital hallways, stopping to hear the beautiful sounds of gospel music from a nearby patient's room (see stories in Motivation monograph), and sharing tears of joy together as we continued down the hall without words.
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Last modified:
11 May 2000