Support from Family & Friends

A Transplant Patient's Experiences with Support from Family & Friends

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.

A Gift of Tears

Let me assure you that the gift of tears is a very special and personal one - and is much more positive than most people realize, especially in these times of opportunity to re-establish relationships and strengthen still others. Mary and I had some very special tear-filled moments - the first in our 26 year father/daughter relationship. I will only hint at those between Jay and I, your own imagination can fill in that picture.

A Time of Growth

As a man who found it hard to express such feelings, this was a time of growth. I had tolearn how to open up to such feelings and sharing. As a patient, I felt guilty at how much inconvenience I was imposing on everyone - my own concern, not theirs. My role was to sit there - with feet elevated (to keep the ankle swelling down) and wait! In the beginning my response to support offers was one of "I can do that myself "- which in fact I could (with some difficulty, but with my image of the male ego, holding onto that independence seemed very important). Family fought the weather and traffic challenges after full days of work, only to return at 10pm at night to maintaining the home environment (cleaning, laundry, paying of bills, answering family calls of concern, etc.) - while I sat with my feet up on the bed, reading my books. That is quite an adjustment - and some of the family will challenge my report of personal progress in this area but as the author, I will lay claim to it.

Just when you feel you've made real progress in this area, you take the test of returning home with medications that totally screw up your mental reaction to such support (again). For the first 5 months (see monograph on Medications) my family learned what it was like to live with a PMS patient. Let me assure you, from my perspective, they were at fault, I certainly wasn't. Their trust and love was tested to the hilt - and in my case, Jay especially (living up to those famous "for better or worse" vows), but also mom, Mary and Mike - passed that test with flying colors. The patient may not be able to react any differently from reading and understanding these experiences, their thinking is clouded by these PMS symptoms (as described by the transplant team in response to Jay's urgent call to them with "Who is this monster you sent home with me?"). You as family can understand, and with a personal gift of loving understanding, get through this dark tunnel that stretches from the surgery through about month 5 - so be prepared and hopefully you too can pass this test.

This adjustment of accepting support is was equally true in the area of nursing support. Here there is a fine line between accepting that beautiful support and remaining responsible for yourself as a patient. Together we shared education, tracking of medications and daily intake/output. They were the trainers, I was the student. At fifty, I was used to taking care of myself, so this was tough too.

Another benefit from having family there to support the patient lies in the retention and interpretation of what the doctors and nurses tell you. Quite often we found ourselves at odds over a direction. This difference of opinion resulted in a call to the transplant team for clarification, thus avoiding an error that would have taken place if only one of us had been there to hear that directive.

The Three Heart BEATS

When I entered the hospital to wait, there were two other patients already waiting. We formed a mutual support team and learned from each other's experiences what to expect and how to handle challenges that arose. One example of this was the false starts that sometimes occur - points when they think they have a donor heart, prep the patient, and later have to cancel the preparation due to some unforeseen complication (i.e., a donor's family changes their mind at the last minute). One of our group experienced such false starts twice and I can't describe in words the depression he experienced each time after the euphoria of expecting the transplant. Seeing this, we learned to anticipate such things and controlled our own reactions when the call came for our own hearts. In my case that even caused me to awaken after the transplant without realizing it had actually taken place - that's how good I felt. It was only after I asked the nurse "False start?" that she confirmed I was indeed beating with a new heart. Wow! The 3 Heart BEATS (Bodies Eagerly Awaiting Transplant Surgery) were a special mutual support group and we found things to do together as we waited out our many weeks in adjoining rooms. When we didn't feel like exercising, we got up and walked anyway because the team was going for their daily hallway walking, IV poles and all - quite a sight, I assure you. Even our families shared their support with all three of us. And then the miracle of miracles happened, all three of us got our hearts within the same week - talk about support systems. To this day we still talk and compare lessons learned and progress made. "Thanks, guys!"

Other Special Support Happenings

Talk about support! There was the day my 26 year old nephew, Jake, himself fighting a loosing battle with leukemia, showed up for a surprise visit. He had been to see his own doctor that morning and they said he was dying. From northern New Jersey, he had his family drive him the 2 hours down to my room in Philadelphia to fulfill a commitment he had made to visit me on that date! Impossible, but he did it! There he was, sitting in a wheelchair (so weak - barely able to talk) in my hospital room! What an inspiration. But then this was the same guy who had asked his doctors about donating his own heart to "uncle Jim" - an impossibility with his disease, but what a support offer that was. I cried when I heard that. I cry again as I write this. It was a very emotional moment. Jake didn't take the excuse of: "but I don't know what to say..." - he figured it out and said it in whispered voice - but so loud in his actions. I must tearfully report that Jake did pass away some 7 months later - 5 months beyond what any doctor said he could live. A real testament to the power of the human spirit. When you feel you've waited too long in your hospital room, think of Jake, in pain and isolated in a hospital room for 1-1/2 years! - with no hope of a transplant. In his case the bone marrow transplant couldn't save him. "Thank you, Jake!" He was a constant inspiration whenever I found myself feeling down. His visit was so unbelievable that after he left I could not believe that he had actually been in my room!

Jake's dad, my brother-in-law, Bill, offered support in his own unique way. We had been corresponding via tapes letters for many years now. In the hospital each letter became a treasure as he became more and more creative in its contents. Just picture this one example: I'm sitting on the bedside eating breakfast - but with earphones on attached to the Walkman unit with Bill's latest tape in it. He's on his way to the hospital to visit Jake as he continues his battle with leukemia and talking to me on his portable tape recorder the whole way. He is forced to stop as a train crosses the road ahead. Knowing our mutual love of trains, he punctuates his monologue of vivid description of the fall foliage and beautiful new diesel engine with the sounds of that train passing, whistle and all. As I often do in response to his style on those tape, I am not there in that hospital bed, rather I am sitting beside him in that car in New Jersey, watching and listening with childlike thrill as the train passes. It was great to get out for such mental trips often through my hospital stay. "Thanks, Bill!"

Another time, I'm laying on the surgical table awaiting an operation to implant a pacemaker. A little hiccup in the quiet 5 week waiting. From under the drape over my face all of a sudden there's eyes looking in and the voice of my local cardiologist, Dr. Magness. She offers words of encouragement and tells me that her nurse, Janet, has sent a gift - a stuffed dog in a little gift bag. "I'll leave it here so you'll have it when they take you back to your room after the operation." What a thoughtful touch at such an anxious moment. I relaxed and laughed myself off into the dreamland of the anesthesia. Just one of several times that these beautiful people found ways of reminding me that "they are thinking of you."

Another item my son Michael brought was a huge poster created by his fellow workers - people who only knew me through him - yet they all signed the GET WELL WISH from the people at MERCK. I mounted that on the wall across from the end of my hospital bed. Every morning it was the very first thing I saw with that beautiful upbeat message - from another group of "strangers" suddenly friends. Again, it meant more to my recovery than the pills I was taken every day - at least it seemed that way A great way to start each day, I can assure you from personal experience. Other groups of similar strangers formed prayer groups - in all forms of religions. It was so inspiring and supportive. I can never repay them for such love, but I'm trying to with the gift of this writing for you.

Above and Beyond

A book could be written about the beautiful, loving, and professional nursing support I received while hospitalized at HUP, but let me just use one example to represent the many others. Mary Ann explained upon my admission that she was to be "my head nurse" - a new concept for me. Not only did she retain primary responsibility for me at all times, but even after I left, if I were to come back, she would still be my primary - a very powerful bond develops with such a committment. She became my teacher in so many things, i.e., the medications, the procedures, what to expect, etc. Whenever I strayed beyond the directives given by the doctors, I encountered her wrath, but not from that of a disciplinarian, rather from a close friend who felt betrayed in her care of me by my action. I apologized and got back on the program. She shared my favorites in new age music. She often took my outgoing notes and letters to her local home mail box rather than let it get lost in the internal hospital outgoing mail service. We learned together how to use visualization to more effectively draw blood or put in heplocs. She wished me well when I was taken off the floor in the bed for procedures or catheterizations, and was there, often having held my warm meal for the hours gone, to welcome me back to my home/room. As many things changed, she was a rock of stability. After surgery we were pleasantly surprised to find that conditions were such that I was returned to her floor and care (usually you went to a different surgical recovery unit), and she made sure I left in the best of condition directly to home. Mary Ann followed the same nursing model that my beloved mother (herself a nurse) has set for me over a lifetime. To you, and all the HUP nursing staff I can't possible name here, for all your professional care, daily smiles, and loving personal support: "Thank you all!"

As yet another example, Sally and Gloria, two of the many special nurses at HUP (Hospital of the Univ. of PA), were absolute clowns and went out of their way to lift the spirits of the 3 Heart BEATS time and time again. We got to go up on the hospital roof and visit the helicopter and its crew - while overlooking the sun filled skyline of downtown Philadelphia - Neat!!! After weeks of sitting in a very confining room, this was absolute heaven. It took time for the eyes to adjust to bright sunlight again.

Another time the nursing staff engineered a trip (no small task when you consider the IV connections that had to be maintained, the heart shocking equipment and monitors that had to go along, not to mention the hallways under construction that this parade - it took 4 nurses to get the three of us over there - had to navigate) to hear a lunchtime piano concert being held in a distant part of the HUP complex. The music - and the fresh air getting there - were very special treats.

Yet still another time, Sally took Jay and I just across the street - again with full equipment in tow and a street so under construction that a lesser person would have rightfully aborted the attempt with "It can't be done." She would have been right in that assessment - but then this was Sally the Invincible! We crossed the downtown traffic over crumbled street and curbs in a wheelchair and monitor cart. Looking back on it now, I still question whether it is possible - but we (no, she...) did it. And so we got to sit across the street amid colorful fall mums and acrobatic pigeons - and Jay and I held hands (here come those tears again - see, I am getting to be more emotionally expressive) - and before the backup battery ran too low on the traveling support equipment, we returned to my room, thankful and revitalized, to continue to wait for the day when I could do such an outing on our own (God willing - so easy to say now that I have this new heart - but just a distant ray of hope at the time). I pray that you too will have your own "Sally's and Gloria's to give that special medicine that goes beyond the prescribed regimen of pills and infusions. "Thanks to all the special nursing staff who helped in so many ways. We can't say it enough."

Still More Special Support

Last, but not least, let me just add a special note of thanks to the HUP Transplant staff. Over the whole experience, not only Kathy and Heather, the transplant coordinators whose everyday upbeat spirit will forever remain an inspiration, but also the doctors headed by Dr. Loh and especially Dr. Kelley, and so many others became special friends. Their concern went beyond the bounds of expert professional care. Their listening and supporting bedside manner really did so much to make this the positive experience it was. Dr. Ackers, the transplant surgeon, sitting there sharing his own emotions as he described "I held you heart in my hands..." - this was not a clinical explanation, this was a close friend sharing emotions that were so special (how many people can say they actually "held your heart in my hands?").

To all of you, I repeat here for the whole world to read that which I have said to you personally time and time again: "Thank you, from the bottom of my (new) heart!" As a patient I was truly blessed to be under your care and alive to say that today.

Daily Spiritual Support

I called the hospital's chaplain early in my stay to ask for their support but couldn't have anticipated the beautiful relationships that developed with each passing day as they stopped by to offer friendly conversation and spiritual support (like daily communion). Three or four different priests, nuns, and laymen shared the visits, and I can't tell you how very much that meant to this patient.

Another time, my brother-in-law Chuck, himself enduring a life-threatening illness, drove the 2 hours down to visit along with my 79 year young father-in-law, Charlie. Family took over caring for his wife who was lying in bed at home, herself comatose from a brain tumor. It wasn't easy, but they came and offered their own gifts of self. Chuck was one of those regular correspondents who never gave up on me. "Thanks for your mutual faith, guys." It meant a lot at a special time of need. We prayed together when the chaplain came by for his daily visit - asking for 3 miracles (we never think small) - for Chuck's life, for Ceil to come out of the coma, and for my new heart.

Still Other Support

How do I describe the visits of fellow workers, neighbors Kathy & Lou and their two young daughters, Sarah and Katie, my lifelong buddies, Ray & Steve, whom I hadn't seen together for many years. Bruce & Cheryl and their daughter, Jill (Jill visited despite being very afraid being inside a hospital, making her gift even more special), long time family friends came and left part of themselves there with each visit. My boss and dear friend, Jim, somehow knew how to visit just long enough and yet not overstay that time - and he came again and again. "Thanks, you are all so special and everyone one of you played a unique part in my recovery."

Such visits were supplemented by phone calls from far and wide. One day a small box arrived from our former home area in Albany NY - it contained 3 apples! Apples from a very special family of supporters, Ken & Karen Pass, those apples grown on his own backyard apple trees. Talk about special! Their daughters, Lisa and Amy, kept up their own sharing via letters. One day Amy's letter contained a tape of the opening music from the movie, Forest Gump, and in her letter she reflected on my now having time to listen to this - and asked the question based on the opening feather scene of that movie: "Do we have control of our life's destiny?" Quite a thought to ponder as I lay there hoping a new heart would arrive in time so that my own life would have a future destiny to control. What a thoughtful gift!

Support at Home

Finally the operation was over and successful. We returned home just 10 days after the transplant operation in fine spirits. Now the real work was to begin - recovery and hanging on to a heart that, if left to its own devices, my body would destroy as a foreign invader - a challenge, I am told, that will remain for the rest of my life. As an immune suppressed individual, I had to avoid contact with children, large groups, and even visiting friends had to wash their hands before entering the house. Once home, the need for support continues and in my experience, came in many forms.

Just before Christmas, we were surprised to hear the sounds of singing as carolers from my office showed up to lift the Christmas spirit of the whole family. There was my boss/dear friend, Jim, dressed up in a full Santa outfit (bells and all) - Kathy our famous secretary turned cheerleader, along with about a dozen other friends singing for all their worth. Describe that feeling in this patient? - my gift of words is not strong enough to do it justice. You'll just have to use your own imagination.

The ongoing interest and concern of these co-workers provided an opportunity that the doctors (and my wife) accepted. I could invite a pair of them over for lunch each week. I prepared the lunch and we never talked business. What an uplift to my week, while at the same time, the office got weekly, first-hand reports of progress. We had fun together - my preparation of the luncheon spectacular - they in getting away from work and sharing my experiences. I thank them all for putting up with my constant talking about this amazing heart miracle and new life. Looking back on it, their biggest gift was that of being quiet listeners - and of course a loving hug. "Thanks Mark, John, Kathy, Debbie, Marcy, Karen, Emery, Wayne, Chris, Dick, Terrance, Jim, Gil and all those many others who helped lift each passing week to new heights of full recovery."

A Time of Frustration and Opportunity

My wife, Jay, still talks about her frustration in my not sharing enough feelings with her over these weeks and months. I was learning how to do that slowly. It meant undoing over fifty years of living a closed-emotion life style. I hope you find that these writings indicate a change in this area of my life. We're still working on this as part of our new life together - made possible by this new young (I must have told you it came from a 20 year old, right?) heart now mine.

This time of waiting, and the recovery time in the months since, have been a real challenge, but also an opportunity to re-evaluate life. You know that old question: "If I had life top live over, how would you do it differently?" Well, you are being given that new lease on life - so what are you going to do with it? In all areas of that life I have set new goals and daily strive to take advantage of this extension of life made possible by so many supporters. I pray and hope that you too find such opportunity in your own life - made possible by the loving gift of a supporter we never get to meet or know enough about - our heart donor.

In Summary

Remember, as a patient you have many roles. Besides that of patient, you can be a supporter to those around you - they carry much of the burden of fear and worry. You can be a supporter to fellow patients - some less fortunate than yourself in terms of this support network. Seek them out (my goal was just one per day - see Motivation monograph) and give of yourself - over and over.

As family and friends of the patient, my message is that you can make a significant difference in the whole healing and recovery process with your love and support. Just be yourself and offer the gift that only you can give that unique you! Your encouragement is precious. Don't miss the opportunity. And, please, say a little prayer for me too.

Sincerely and with HEARTfelt thanks,

Jim Gleason