“Twenty-five is nearly unheard of . . .”
Recently someone sent me a link to a long article about transplant and organ donation from the Washington Post weekend magazine. I began to read it, but being all too familiar with its storyline, after a few pages, put it aside. The next day another friend e-mailed a link, followed by yet a third later that day. I took that as a message that I should go back and read the whole article. It was well written, describing both the donor side, the surgery process and the experience from the transplant patient side. Imagine my surprise when towards the end there was this one paragraph talking about longevity of heart patients post-transplant, no other organ longevity discussion, just the hearts. What really caught my attention as I read this thriving 26 years with my own heart transplant, was the final sentence of that which read:

“(heart) Transplant survival rates, while vastly better than before, are still not extraordinary. Only half survive for 10 years or more. Fifteen years is considered excellent. Twenty is remarkable. Twenty-five is nearly unheard of.”
– Washington Post September 30, 2019
by Gene Weingarten

Wow, ‘unheard of?’ I constantly celebrate the long-term survival life I live every day, but this really caused me to stop and reflect on that statistic. I can assure you that in my circles, that is NOT unheard of because I constantly share the fact by way of educating the community of the success of organ transplant (so register to be an organ donor), and to inspire fellow transplant recipients to expect that long life.

In reading a memory I posted to a fellow heart transplant recipient’s blog back in 2018, I had the opportunity to capture it for sharing here today:

In rereading her beautiful post, I flashed back to an earlier memory of my own from a local county fair visit. Standing in line, several years post heart transplant, at the fresh donuts stand I heard the unmistakable sound of a helicopter coming close overhead. Looking up I recognized the Penn Star helicopter that often transports organs from the distant donor to the hospital where I received my own heart transplant, Penn Medicine in Philadelphia. It’s always a beautiful sight, high in the skies normally, but this time it was landing at the fair to allow visitors to tour the helicopter up close, firsthand, just a short field distance away from where I was standing. My reaction was very emotional, standing there watching it come in for a landing, tears welling up in my eyes as I recalled waiting for my heart back in 1994, looking out from the hospital room window that overlooks the heliport landing zone on top of that hospital, wondering if this time it might be with a heart for any of us, the three waiting patients, John, Ron and myself. We called ourselves the ‘3 heartbeats’ – Bodies Eagerly Awaiting Transplant Surgery – B-E-A-T-S! What a beautiful sight and heart felt moment to be alive, enjoying the county fair and feeling this way. Note: The 3 heart beats received our three hearts within 3 days of each other – mine on Oct 19th, an anniversary just celebrated with a day trip of love and reflection – and to the best of my knowledge we are all still alive and well now into our 25th year living with prayerful thanks to our donors who made this moment and life today possible.

(October 1994 photo above) During our waiting in the hospital for possible hearts (as was the practice back in the early 1990’s, you waited IN the hospital, LVAD’s became approved just a month or so later), Ron, John and I were treated to an excited excursion (with brave nurse and heart support gear in tow) up to the hospital roof to see the Penn Star helicopter that might one day soon (hopefully) carry our donor’s heart to its new home. It was awesome to breath outside fresh air and see both that helicopter and look out over the Philadelphia skyline off in the distance.

At the funeral of a good friend recently, I was honored to share this beautiful reading that so applied to the life-time romance of more than 70 years that has inspired my own and so many other relationships. Please enjoy the scene described in this sharing, edited with this couple’s names from the original piece written by another inspiring author, Bob Perks

“Are you still holding hands?” I know that Archie is, even after Russ’ passing

As someone who fits into three high-risk categories for the COVID19, not sure where I would place in the priority of vaccines when they become available. Personally, I am not overly anxious and can wait to give others who may need them first, to get those early shots.
As you know, I am a ‘cookie monster’ which is a way of living that I openly share as I did as a closing message in this virtual presentation last month for a huge day-long NYC event about ‘living kidney donation’ – thought you might like to see how I explained that CM concept to this audience:

So, the question is, “Are YOU a cookie monster?”

In my favorite transplant love story movie, Return to Me, there is a touching scene dealing with the difficulty many transplant recipients experience in writing that thank you note to their donor family. In this scene, Grace, the heart recipient (played so perfectly by Minnie Driver), is still torturing herself about actually mailing the letter she has written and been carrying around with her since receiving her new heart a year ago. Her sister (with five small kids in tow) offers her the encouragement she finally needs to so tentatively drop that letter into the nearby mailbox there at the zoo (where, coincidently, her donor’s spouse, played by David Duchovny, is working and they come into contact for the first time). While this may be just a movie fictional story, it does accurately capture the difficulty many recipients find in expressing themselves after a life-saving organ transplant.

Reaching out to a large random sample of recipients, I asked for insights as to why patients hadn’t written to their donors, at least to express a simple thank you. The response was not overwhelming, indicating I hope that most actually do write, but enough replies came back to provide a realistic insight into that lack of communication. But let’s be reminded upfront that both sides of this gifting process understand that neither is under any obligation to communicate, accepting and respecting each other’s rights in that it is an anonymous giving and accepting process. That said, human nature being what it is, there is often an expectation by donors of some acknowledgment and a corresponding interest by some recipients in knowing something about the donor. But given the process, neither side knows enough about the other to be able to understand what to expect or what is acceptable, and thus lies some of the basis for the insights shared in this too brief article, reasons which are as varied as the parties involved in the issue overall.

Reason #1: Perfection/inadequacy – Most write, but either rip it up as not being good enough, wanting it to be perfect, not being able to find the “right words.” Tony shares: “I haven’t written to my donor family cause I just don’t know what to say. Words cannot describe how thankful I am to them for giving me a second chance at life! That was a miracle itself! It is overwhelming to me at times cause I wouldn’t have my daughter either! There are no words that could express my feelings for saving my life and giving me the child I have always wanted! I am forever grateful” I can hear you thinking as you read this, “But she just did say it!” Or as Ken, a liver recipient one year out, put it simply when he finally did write: “You never received any of the other letters I previously wrote, because I was left feeling none of them were good enough to express my feelings reasonably well. This attempt may not be as good as I would wish, but I feel ashamed that so much time has gone by without a word of acknowledgment or thanks from me. If I continue to keep striving for perfection it will delay the message to you even longer.” So while an often cited professional or friendly advice “to just write it from your heart” empowers some to overcome this “never perfect enough” concern, saying that isn’t the same as actually doing it, which leads to the second most common response.

Reason #2: Fear – Even once written, actually mailing it (as in the movie) is still a big challenge for many, mostly out of fear of causing pain to someone they feel so grateful to for this ultimate life saving gift offered at a time of extreme tragedy for the donors, and it is recognized that that donor is often the living person who said yes to the donation request, the one who will be reading the letter. Here is where that fear of the unknown comes to play, not knowing the family situation of the donor family, are they ready to hear about where their loved one’s gifts went? Will such a note bring back all the pain and grief felt at the time of donation? And then we have the choice of words, not just the “perfect” words, but the expression of that gratitude, reason #3.

Reason #3: Grief vs. celebration of life – As Pat wrote: “…there wasn’t any way to say how grateful I felt to have gotten this chance at a normal life with my big, ever-so delighted family without feeling that hearing all our good news would cause sadness and hurt to the donor’s family.” This was repeated in many variations as this from Sandy affirms: “As the years rolled on, I found it much harder to write, because now I didn’t know what to say. I was still equally excited, but felt as if I was saying look at me, I am doing great, while your loved one is no longer here.”

Reason #4: Privacy – John is one who did write shortly after his transplant, and received a loving response, would like to write again but hasn’t since out of respect for the donor family’s privacy, not wanting to intrude further on their lives. As many shared, Richard too wrote, but tore it up many times, even though wanting desperately to hear from the donor. Instead he keeps the thanks in his daily thoughts and prayers for the donor and their family, never actually finishing that note out of respect for their privacy.

Reason #5: Ignorance – Not as common with today’s education and support for writing, but cited by some long term transplant survivors such as Eddie, who got kidney transplants in ’71 and ‘80, such communications were not encouraged and he got little if any knowledge of a process by which such a note could even be given. Eventually such patients acknowledge feeling it is too late and reason #2 comes back into play, not wanting, as Joan, a long term liver recipient said, to “reopen wounds” for the donor’s loved ones, not knowing if that is a widowed spouse, child’s mother, loving sibling or whomever.

Reason #6 – Protective oversight – From a “new heart family” we see another roadblock when “…in 1985, I wrote a heart-felt note to my donor family. Many years later I discovered that the letters are screened by the hospital staff and they can decide not to send it without letting the letter writer know.” This can also be well intentioned OPO staff making protective judgments based on their direct contact with the donor or patient family. I have also known donor families who have hidden recipient letters from a loving mother out of protective concern, only to find that “discovering” one such letter years later, she was open and thankful for that message, eventually asking for a meeting with the recipient.

Maybe the best advice for patients in overcoming such reasons can be found in the following insightful sharings from Steven and Robert (among others), heart recipients, who wrote similar words (merged together here…): My Coordinators told me to just be myself and write from the Heart (pun intended). I wasn’t sure how to do that, but after more false starts, I finally sat down one afternoon to write the note and I told myself that no matter how it came out I would send it. I decided to write it with pen instead of typing as I thought this more personal. I did mail the letter and have never heard back from them. After many, many false starts we hear another’s variation on this: …but the thought that came to me was “Just write it from your donor’s heart”. The letter that I eventually sent took me twenty minutes to write from start to finish. You would think that deciding to write a letter would be an easy task compared to the decision facing the donor family and at the worst time of their lives. Sometimes we need to look at the big picture. Fortunately, we as transplant recipients get a second chance to do just that.

But then, maybe things haven’t really changed much in 2000 years when we recall how in the bible story about Jesus healing the ten, only one comes back to say thanks. But my experience tells me that our numbers today are at least better than that 10% and are getting better with each passing year. From this grateful fourteen year out heart transplant correspondent, let me say on behalf of recipients everywhere who still wrestle with the issues above, our love and thanks go out to donors everywhere, if not in letters still locked in our hearts, at least in daily thought and prayers for you and your loved one.

And one last thought, as eight year out heart patient Gene acknowledges, “…I know the above feelings are just excuses and I hope to someday to be able to write a letter”

For an expanded discussion on this topic, you can read the on-line chapter #31 of my on-line book, “Gift from the Heart” (67 pages of letters, shared e-mails from donors and recipients, and related resources) on patients communicating with donor families at http://www.rjwitte.com/changeofheart/GiftFromTheHeart/Section2/CHP-31-DONOR-COMMUNICATIONS.pdf

I love music throughout the house here when I am doing many things. With Alexa service in all our rooms, I can just call out Alexa, play some 50’s music!” and if I add to that “… on the everywhere group” my favorite 50’s songs will begin playing throughout the home! It’s an awesome way to live every day here.

So, on to my story with that as background . . . This morning when I asked Alexa for some Doowop music, the first song was “Put your head on my shoulders…” by Paul Anka. As I listened to that refrain, again and again, two memories flooded back from 50+ years ago.

The first was from my days as a Metuchen First Aid squad cadet when I was maybe 17? One evening three of us were attending a regional cadet meeting some distance from our home town, so the three of us sat together in the front seat, he being the driver (don’t recall who), she (no name recall) in the middle, me on the passenger door side – got the picture? On that long drive, this young same age girl eventually sleepily put her head on my shoulder (same song title again!) and I was in teen heaven for the rest of that nighttime ride. Life was good! Sorry, that’s the whole story, no followup romance, just a moment in a young man’s life that played back this morning, some sixty years later – a wonderful feeling and memory that lasted maybe 30 minutes of my teen life.

Jim as volunteer cadet with Metuchen First Aid squad

Later in life, maybe I was early twenties in my computer career, commuting by bus from home to NYC to teach some technical classes. Each morning, a block from our home, a long line of commuters would line up to wait for the next bus. Bus would pull up, fill with the waiting passengers/strangers, and rest would await the next bus coming immediately behind that first one. Every working day, just routine. This particular day, I was joined in my seat by an attractive young lady – going to be a good day! No conversation, just close quarters on that crowded bus for the next hour til we unloaded at Port Authority Terminal in NYC and walked on off to the office. Fifteen minutes into that quiet ride, it happened again. She slowly and unknowingly (to her) ‘put her head on my shoulders’, sound asleep for the rest of that ride. Me? I was wide alert, very tuned into that magic moment of closeness between man and woman (doesn’t matter that she wasn’t aware!). For 45 minutes I was ‘in man’s heaven’ – enjoying every mile until we arrived at the terminal. Expecting some pleasant apologetic exchange when she awoke to find the situation, I was not prepared for what happened next: NOTHING! Bus stopped, she awoke, unaware I was even there, no less connected by that ‘heads on my shoulder’ relationship, just stood up and walked off with the rest of that crowd. Romantic moments over! And that’s that, until today when Paul Anka’s song reached down deep and brought back those two special moments for the first time.

Life was and still is good!

“Life is so GOOD!”

Recently I received an invitation to our 60th St. Peter’s high school reunion (New Brunswick, NJ). (“WOW, 60 years already!!!”) A very different event this year – a mid-day luncheon consideration for those who may not drive in the evening as we are reaching ‘that age’ in our lives.

I jumped at the opportunity, wondering how many would come (and how many are no longer around these 60 years later) and excitedly mailed in my reservation check, hoping that by that September date we might have the venue open for this milestone event.

Then I began reminiscing about those formative high school years as I lay wide awake at 4am in bed. I wasn’t in the ‘in-crowd’, so didn’t expect many who might come would even remember me, or maybe me them.

Quickly I focused in the dark bedroom on three life-changing memories that I so excitedly wanted to share at that reunion, honoring and celebrating the dedicated Catholic nuns who in those days still taught most of the classes and ran the school with non-challenged authority and a kind, caring heart. But just in case the event doesn’t come off (only 15 out of what I recall was 200 of so classmates have responded 1 month after the invitation went out), I decided to celebrate their memories in writing this blog of Petrean memories.

Life-changing moment #1
It was October of my first high school year that began by attending the noviciate for future brothers at St. Joseph’s (this was before that became a private high school). It had become clear that I wasn’t ready for that monastic life (having not experienced life or girls yet – smile!). As a St. Francis grammar school graduate (Metuchen, NJ), our church was sending district to St. Peter’s (New Brunswick, NJ) some 6.5 miles by public bus distant. Mom took me to see if I could register at St. Peters where we met the principal, Sister Helen Rose (Sisters of Charity supported the school). We were told that all classes were full (huge disappointment!) BUT if I could return next Monday somehow she would find a place for me (somehow!). The first life-changing event due to her compassion and understanding!

Life-changing moment #2
Once assigned to 9D (classes were numbers by skill level, 9A being the best) but a desk was made available and I thrived in that less challenging grouping. I can still recall begging to take biology in place of a study hall (that class wasn’t in the college prep curriculum but I loved the out of doors life of my Summer day collecting frogs, fish, dragon flys, etc.). Each Friday sister would line up the class around the room for a vocabulary drill, one wrong answer and you sat back down – sort of a ‘last man standing’ drill. We were always nervous and the person before me was asked “How do you get down from an elephant?” Little did we know that she was serious, so when that person responded “Sister, you climb down.” she was not amused, angrily told him to sit down, and moved on to me with the same question. With the advantage of his mistake, I of course replied “Sister, you can’t get down from an elephant, only birds have down feathers.” Right answer! Usually, by the end of those weekly drills, I was the last man standing, sometimes just due to luck as in this case. But that leads me to the real 2nd life-changing memory.

Climbing up the stairs, coming down at the feared and strong strict Sister Mary Matilda (a tall woman which made my looking up to her on the higher step even more frightening. I don’t think I had ever encountered her before this moment, she being the teacher of the higher-level classes like physics, religion and even her homeroom was the seemingly ‘elite’ class., certainly not the “D level” where I was now in my junior year, about to move up to that fateful SENIOR year with fateful decisions about what college to apply for, etc. Sister stopped me (on that lower step), looked down, and said, “I’ve talked to Sister Rose (the principal) as asked to have you transferred to MY homeroom. What do you think of that?” While she saw that as a generous and thoughtful way to challenge my learning, I still today can’t imagine how I had the nerve to respond, “Sister (you ALWAYS addressed them as ‘sister’), I don’t like that. I can stay down where I am and get my ‘A’s’ with little effort (work) – remember I was 15 going on 16 and a precocious nobody – or I can go to your classes and maybe get a B or C.” She walked off and can’t recall her words, if any, at my rejection. But of course, the kid’s rejection doesn’t carry any weight and I did find myself reassigned to her classes without recourse.

In her class one day, sister came down by my desk and asked me what college I was going to. My reply was that I wasn’t planning to go to college, not having what I thought high enough grades to qualify, and certainly, my family couldn’t afford my going. Sister told me to fill out some form, which of course, when a sister told you to do something, you DID! Little did I know that it was an application for a NJ state scholarship. Surprisingly, I got approved for $200/semester and decided, ok, if they were willing to pay for half (remember this was 1960, not today’s $50,000/year tuitions), I guess I could come up with the other $200 and applied to just one college, the Catholic college of Seton Hall University in South Orange, NJ (as a commuter, so no food or room expenses). Once accepted, I began my 4- year college career with its own very special memories in the Fall of 1960.

As it turned out, Sister Matilda got assigned as principal to some high school that was just off my college commute path. I made it a point to often drop in on her many Friday’s as we became good friends. She shared her side of that stairway moment, admitting that I almost got knocked down those stairs with my too honest reply to her offer. I certainly deserved that and in those days no parent would have objected if she had. Without her intervention, I would never have gone on to college and certainly not the 40-year teaching and corporate computer industry career that followed, both of which I enjoyed every day of those decades of working life.

And the story continues
But the story doesn’t end there! Once graduated from Seton Hall, I went into teaching and ended up back at St. Peter’s teaching algebra and geometry, loving the students and the daily challenge right alongside the very nuns and lay faculty that had been my teachers. My ‘math lab’ classroom was the basement converted from a janitor’s room when I was a student when bottled milk delivered daily at the doorstep for that janitor. What a unique experience/blessing. While teaching, I went on to earn my graduate degree (nights of commuting down route 1 to Trenton) at what is now the State College of New Jersey, a degree that has also served me well these many years, all thanks to that caring nun, my life-changing encounter with Sister Mary Matilda!

“Thank you, Sister! – and thanks to all those dedicated ladies who gave their lives to convent life and teaching in Catholic schools everywhere.

I am so looking forward to sharing those Petrean life-changing memories and challenging the others to recall their own impactful moments some 60+ years ago at the hands of those nuns at our September 60th reunion!

My high school yearbook picture (1960)
Here’s me today! (2020)
(26 years with a heart transplant received back in 1994)

PS: Despite what I feel is today’s poor memory, in talking with the woman putting this event together, as she mentioned fellow student name after name, I could actually picture their face in my mind! Wow, after 60 years, wouldn’t you love to think you too left that strong an impression for those around you? I would be very surprised if my face came to mind if they heard my name today, but we will find out shortly.

Volunteering as a Metuchen First Aid Squad cadet (1960)
Back to St. Peter’s as a math teacher (1965-67)

Learn how to learn from those you disagree with, or even offend you. See if you can find the truth in what they believe.

Keeping inside most of the time now has opened up new opportunities as long ago friends find time to reach out and make contact. Just this past week three have called ‘out of the blue’ to say hello and ask how are we doing during this strange time. One asked if I still had the photos he had sent 20 years ago when he and I fulfilled a dream of flying in an open cockpit, old fashioned bi-plane (he was the licensed pilot, I was the front cockpit passenger fulfilling a goal I had dreamed up). I was so pleased to share that I did still have those photos of that memorable event – he even let me fly that plane at one point! – hanging here on my in-home office wall!

Then just yesterday I answered an unknown name/number calling to find a fellow heart transplant recipient calling (out of the blue) who had received his own heart transplant just two months after I had gotten mine here in Philadelphia at the Hospital of the University of Pennsylvania, both by the same surgeon, Dr. Mike Acker, 26 (YES, TWENTY SIX!) years ago! I had never talked to him all those years and here he was, another outstanding survivor, reaching out and sharing our post-transplant life stories a quarter-century from that initial encounter!

It is a good time to count our blessings and reach out to others, especially family and friends, or neighbors who would love that touch of a friendly voice, or even from long lost strangers as I enjoyed even this week.

I can’t wait to see what this week brings. And not just wait for those calls, but with time on our hands, who can we reach out to with that gift of friendship to ‘make their days’? As for me, I just reached out to that beautiful nurse, Heather, from the heart transplant program here who befriended me way back in 1994 and with whom I can still connect with across the country now. I can still hear her words, “Mr. Gleason, I think we have a heart for you!” Wow, those still give me heartfelt emotions of gratitude even now, 26 years later.

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Here are two heart transplant friends, Johann and Sam, enjoying a 4th of July hometown parade several years ago – inspired by the story above, I will go and call both of them now!