heart transplant


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!

(Article as posted 8.10.17 on the Chronic Disease Coalition web site at:
https://chronicdiseasecoalition.com/guest-author-jim-gleason-discusses-living-an-optimistic-life-in-the-face-of-chronic-health-conditions/ )

 Many years ago, October 1994 to be specific, I faced the decision of life over death. With an incurable condition of a failing heart, my only option to stay alive was to undergo a heart transplant. I didn’t realize it at the time, but getting a new heart is often characterized as trading one chronic health condition for another, creating a lifelong dependence on immunosuppressant medications that would keep my native protective immune system from labeling the heart donated by another person as being a foreign invader to be attacked or rejected as an alien in my body.

With an average life expectancy of only nine years after receiving a heart transplant – a better alternative than the two years I would have had left to live if I relied on my failing heart without a replacement – I faced a grim reality that was still much shorter than most of us would like to think about. Now, in 2017 and 23 years later, I am living life to the fullest, further beating that estimated life expectancy with every passing year. Having faced death at the youthful age of 51, I now have a 74-year-old body with a 61-year-young heart (yes, as one of the small post-transplant population who has connected with their donor’s family, I know my heart was 38 at the time of donation).

As the years pass, I’ve successfully dealt with prostate cancer, different forms of skin cancer, kidney cancer and emergency gall bladder surgery, along with a host of other advancing age-related health challenges. Each mountain was subsequently passed with flying colors thanks to modern medicine, a great medical team and loving family support that continues to inspire me to face each day with a life-enhancing, positive outlook and attitude.

Though I may be living with a chronic condition, I consider the gift of life through organ donation not as overcoming death, but rather as an extension of life that offers so many daily opportunities to live each day to its fullest. Many describe life with a transplant not as a return to being normal, but rather living a new normal life. Yes, we all suffer from a chronic condition that leads to death, but that’s what being human means. That we can’t change, but how we live with that chronic condition, without letting it limit our daily lives, remains the challenge you and I face today and every day we survive with that condition.

Long ago I accepted the fleeting nature of life and face each day getting out of bed, as I look down at the floor and celebrate being above ground another day. And I see each day as another opportunity to make it my best day yet. I offer that outlook to you as you face your own daily challenge of a life facing your own chronic condition.

Jim Gleason is an author, heart transplant survivor and the current Philadelphia Chapter President for Transplant Recipients International Organization (TRIO).

I’m currently reading yet another amazing heart transplant biography that shows the amazing strength and resilience of the human spirit.  Facing two heart transplants in one week, months of very challenging recovery in the hospital, to today where he lives a normal life with loving family again, with a kidney donated by his loving wife.  Check out that book, I Left My Heart at Stanford, on Amazon by clicking on that title.

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Today, in yet another amazing true life story of overcoming seemingly insurmountable odds of being born without arms, now working full time and living what for him is a “normal” life, driving (can you imagine how he drives w/o hands and arms?), adapting to challenges any of us would not believe but can be inspired in seeing him in daily action, you can see this story in the video at http://www.wimp.com/designscomponents/

Enjoy, and then go on facing your own life challenges with renewed belief that if they can do what you read and view in these stories, you certainly can do your own, getting through your day too.  As for me, I am working in my office, looking out the window at Pam’s beautiful garden, watching an amazing display of aerodynamics as a humming bird does his daily visit on the flowers in hanging planters just outside that window.  Life is good and I pray that you too are living that same experience today and every day as we count our blessings.

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Recently I had the honor of being interviewed as one of several heart transplant leaders of our local 800 member heart transplant support organization based in the Philadelphia (PA/NJ area) for an article featured in the Philadelphia Inquirer’s Heart Health newspaper special section that came out Thursday (2/21/13).  Both the interviewer and the photographer did a great job in what became a full page plus article about the group.  Interestingly the photos in the B&W print version are different than those in color in the on-line version.

Check them both out, first here in this scanned image,

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print version of the article (on-line link follows)

and then clicking here –> link to the on-line version article

Jim wi photos 2013 Phl Inq article

where its possible to read the full article.  (article by Don Sapatkin, photos by Tom Gralish)

             Yes, as both photos display, life is good!

PS: As my usual good luck would have it, these photos were taken just one day before some extensive nose surgery to remove skin cancer, a real “nose job” that definitely would NOT have worked with that article.

Now, a week later, things are getting back to normal with those two black eyes and a very swollen red nose stemming from the surgery becoming a fading memory and lesson in vanity.  That photo you DO NOT want to see!

Somebody said, “We can’t afford to put on the US Transplant Games any more.”  Somebody else said, “We can’t afford not to put on the games!”  That one believer/advocate went on to organize and lead a support team to host the new “Transplant Games of America” to be held with too short a time to put it all together in Grand Rapids, MI. and then went ahead anyway and made it all happen.  What a great time we all enjoyed there this past July.

Locally our Gift of Life Donor Program again pulled together the (in-)famous Team Philadelphia, known for its large size and strong medal winning team of transplant athletes, donor families and supporters (especially Howard Nathan and his staff).  While many couldn’t be there in person, you and they can now watch the Team Philly video of the 2012 games event here on the web.  Both Pam and I were fortunate to be a part of this grand fun adventure yet again.  The team photographers did a great job capturing everybody on our team.  Now, along with everyone team member, we look to see ourselves captured in these wonderful video moments that are now just a memory, but enjoyed again in watching this team video over and over.

Come, join in the fun as we watch it again: 

Happiness is a butterfly, which, when pursued, is always just beyond
your grasp, but which, if you will sit down quietly, may alight upon you.

NATHANIEL HAWTHORNE

Can you allow me to share yet again some of Bob’s beautiful daily writings (you can register to get these yourself using the info at the end of this story) and see my reply to him at the end, a special memory triggered by his story:

“Can you see Heaven in tomorrow?”
By Bob Perks
“Daddy, put me on your shoulders and let
me touch Grandma’s hand!” the little
girl said.
Daddy bent down, turned her around, and
lifted her high above his head until
she was safely positioned on his shoulders.
“I can see tomorrow up here, Daddy,” she said.
“You can?” he asked. “What does it look
like?” he questioned her.
“Just like today, but more pretty!” she giggled.
“Now hold on, Jenny. I’m going up on
top of this hill. When I tell you to,
stretch your arms way up and you
can touch her hand.”
He carefully walked up on top of the
small hill just behind the bench I was
sitting on. The softball fans sit there
each evening during the spring and
summer watching the local players
compete. But today this hill served
a higher purpose.
For this is a spot where memories are
made. This is a moment between parent
and child that gets filed away in memories
for tomorrows yet to come. Perhaps when
this young girl will hold her babe high upon
her shoulders and together they will reach
for Grandpa’s hand, just like when she was
a child.
He came down to where I was seated. His
daughter played nearby. Her Daddy told
me afterwards that Jenny was very close
to his Mom. She died a few months ago.
“Jenny said she wanted to hold hands with
Grandma like she always did. I told
her Grandma was in heaven, out of reach,”
he said.
“Jenny told me that heaven is in tomorrow.
If she climbed way up high she could
see it and touch Grandma’s hand.”
“Why did she say that Heaven was in
tomorrow?” I asked.
“Well, the last time she saw Grandma,
she told Jenny that one day soon she would
go to heaven. Of course Jenny wanted
to know when. Mom said ‘Maybe tomorrow,
Jenny. She died two days later.”
“So, then,  heaven is in tomorrow,” I added.
“So does she feel Grandma’s hand?”
“Yes, very much so. In fact…” he paused
when his daughter came running up to
him.
“I’ll be right there, Jenny.”
Jenny is such a beautiful child. You look
at her and think “buttons and bows”
like a little girl in a story book.
Her Daddy continued. “One day when we
did this, she stretched out her arms and
said, “Daddy, I can feel her hand!” Of course
I played along and asked if it were soft like I
remember.” He stopped for a moment. Shook
his head and looked down. I guess the memory
of Mom was still very much alive in him.
“She then said, ‘Yes, Daddy. She has a ring
with four colors on it.” I couldn’t believe what
she said. I asked her to tell me again. She
described it as best she could for a young child.”
“Did she remember a ring that Grandma
always wore?” I asked.
“No. That’s what amazed me. You see that
ring was her Mother’s ring that we gave her.
Each colored stone represented one of her
children. She couldn’t wear it for year’s
because of her arthritis.”
Once again he stopped to gain some
composure.
“We placed it on her finger when she died.
We had it cut to fit her.”
“Could Jenny have seen it then?” I asked.
“No. We decided not to permit Jenny at the
funeral viewing. She was much too
young to understand.”
“So, Jenny never saw the ring?” I asked.
“No, not until that day. When she saw
Heaven in tomorrow.”
Jenny came rushing over and Dad and I said
our goodbyes.
I thought a lot about this today. I asked myself
a hundred times. So I’ll ask you.
Based on who you are. Knowing more about you
than anyone else. Having whatever
faith you may have in yourself, your God.
Can you see “Heaven in tomorrow?” If you
believe just reach up right now and
touch it.
Jenny did.
“I wish you enough!”
J
Bob Perks
I encourage you to share my stories but
I do ask that you keep my name and contact
information with my work.If you would like to receive Bob’s Inspirational
stories, please visit http://www.IWishYouEnough.com
and submit your email address.

“I Wish You enough!”
© 2001 Bob Perks
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear
much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough “Hello’s” to get you through the final “Goodbye.”
And in response, I wrote back to Bob quoting from his message the phrase:
“Can you see “Heaven in tomorrow?” If you believe just reach up right now and touch it.”

“Oh, yes, I can…” and have even felt that when I was laying on an operating table in the hospital, reaching out to my own dad and very much felt a little girl there with him.   At first I couldn’t figure that out but then realized that I had a sister who had been killed, hit by a car by our home in New Brunswick NJ when I was just 5 and she was 4.  It was “Sissy” and I knew they were both right there, within my reach, as they were doing a cauterization of my newly transplanted heart.  Yes, Bob, I can….
(I love your daily sharings – wouldn’t it be wonderful if everyone saw those miracles about them every day like you do?)   With your stories, I think I know enough about you to presume to recommend to your reading a beautiful book:
Dying Was the Best Thing That Ever Happened to Me
, Stories of Healing and Wisdom Along Life’s Journey by William E. Hablitzel, MD (July 2006) I think it is your type of special insights into life.

One of my favorite writers of a daily article of inspiration and interest is my good friend, Bob Perks.  I highly recommend you join his ever growing distribution list and enjoy a daily uplift of an insightful shared life reflection.  In today’s message, titled: “No One Has the Time,” I was very pleasantly surprised at his promotion of organ donation in that reflection.  With his permission I share it here and hope you will both enjoy this beautiful writing and take advantage of a free subscription to his daily mailing:

“No one has the time”
by Bob Perks

I have this old mantle clock that belonged to my mom.  My dad gave it to me years ago after mom had passed away. I have mixed emotions about having it.  I love it because it was hers, but it also holds some bad memories.You see it chimes.  Nothing elaborate.  It counts out the hour and rings once on the half.  Or at least it used to.  Now you never know what number it will ring.The only bad feelings about it comes from the fact that when my mother was home dying from cancer she asked that it be unplugged.  Hearing the hours count down really angered and frightened her.
Still, I want to get it fixed so we can remember the good hours we had with her.

I took it to a local clock shop the other day. “I know this has no particular value as a clock, but it was my Mom’s and I need to get it fixed,” I said to the shop owner. I went on to describe the problem. “We get a lot of these in.  Here’s what I do.  We remove the clock works and replace it with a battery operated movement that chimes electronically.  It will cost about $135.00,” he told me.”You can’t fix this?” “No, we don’t have the time nor the parts.”

I thanked him and went home.  I called a few other places and was told the same thing.”How incredibly sad,” I told the last one. We’ve become a society that replaces craftsmanship with convenience and easy fixes.  We copy the original instead of creating one.  We replace handcrafted with machine cut. We duplicate instead of originate. It sounds so much like life itself. Each of us is an original, one of a kind, but we find it so much easier to copy another style than to develop our own. We are “wanna be’s” rather than “hey, world, look at me!” We fail to see the real value in who we are, so we spend our life trying to be someone else. So, this beautiful hand crafted clock will one day be deemed useless.  Not because it couldn’t be fixed.  It’s just easier not to. Imagine for a moment if this happened with people.  Someone comes into a hospital with a failing heart, kidney, liver or other vital part and the doctor said, “Sorry, we can’t fix this…we don’t have the parts!”

Wait.  That does happen.

Why?

Because we don’t have enough organ donors.People would rather die with all their parts to rot in a grave rather than leave them to save someone’s life.  Oddly, when asked why more people don’t sign up to become an organ donor it’s for the same reason…”No one has the time!”

Make time before your clock stops working!

For more information visit:
http://organdonor.gov/
“I wish you enough!”
J
Bob Perks
I encourage you to share my stories but I do ask that you keep my name and contact information with my work.  If you would like to receive Bob’s Inspirational stories, please visit http://www.IWishYouEnough.com and submit your email address.
I Wish You enough!”
© 2001 Bob Perks
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear
much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough “Hello’s” to get you through the final “Goodbye.”
Jim G adds: Bob certainly makes a beautiful story out of this very powerful message.  As one who has lived now 16+ years with a transplanted heart, and those are very fulfilled and fruitful years of vibrant life, making the most of that gift and helping many others along the way, I wrote back to Bob and offered both my testimony and thanks for his message that goes out to thousands across the internet.
“Way to go Bob!”

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