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.
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.
Return to A Gift from the Heart table of contents
Last modified:
11 May 2000