Part 8: Approaching a Second Anniversary

The story of one man's heart transplant, from initial diagnosis of cardiomyopathy in July of 1992 through recovery from heart transplant today in August of 1996, written now in eight parts.

- written by Jim Gleason

from 7/92 through 8/96

Heart Transplant Recipient reborn on Oct. 19th, 1994

Written at home (Collegeville, PA) - August, 1996

"Nothing is for free along the way.
A new start,
That's the thing I need to give me a new heart..."

. . . beautiful lyrics from the musical Jekyll & Hyde that have so much meaning in life today in light of my heart transplant almost two years ago

Summer of 1994 found me short of breath at the slightest physical activity. It had been two years earlier doctors had diagnosed the viral cardiomyopathy - victim of a brief bout with virus that had attacked my 51 year old heart. Life was limited by heart damage that had reduced that fist sized muscle to a life threatening 15% of its normal function.

The "Miracle" Call

Now it is the summer of 1996, almost two life-filled years since receiving the news that I had less than a year to live. That had been followed by a life saving heart transplant at the Hospital of the University of Pennsylvania in the fall of 1994. Today is filled with preparation for athletic competition with 1600 other transplant recipients at the August US Transplant Games to be held in Salt Lake City, Utah. Instead of sleeping away my days and battling sleepless nights, I now practice tennis, swimming and badminton skills. As a member of Team Philadelphia, 150 local Philadelphia patients who celebrate the gift of life each and every day as they practice, the future is full of hope and challenge. What a difference!

So many family, friends, supporters, and fellow patients have responded to the earlier chapters with enthusiastic requests for more, it was decided to capture this past year in yet another final summary section. Please join me as we live today, this past month and indeed, this past year blessed with renewed hope and heart filled energy, the result of a blessed gift of so many, especially that of an unknown family who, at a very tough time in their lives, decided to pass on the heart of their loved one through the miracle of organ donation to give me life as I enjoy it today.

Medications '96 - A Change to NEORAL

When friends ask about the transplant today, it is often in the words: "How do you feel?" and "Are you still taking those 44 pills a day?" I respond that I am, in fact, feeling even better than I look, and that is the amazing truth. It is curious that there is such fascination with that "44 pills a day" fact that we faced immediately after the transplant. Today, we continue to walk that fine line between reducing the immune suppressant medications to a point that allows the heart to not be attacked (and rejected) while at the same time maintaining the body's defenses against the common bacteria and other invaders we all live with every day. Today I take just 8 pills - just 3 prescriptions - two for controlling that immune system: Immuran and Neoral, while the Hytrin is used to keep the blood pressure down. The Neoral is a new advance in the immune suppresant regimen that is fast replacing the famous Sandimmune. Both are cyclosporine, but the Neoral, introduced last fall, is a new formulation that is more easily and evenly absorbed. While this often may result in reduced dosages for some patients (with its side benefits of less pills to handle and reduced patient expense), in my case there was no change.

The decison to change was not undertaken without some concerns, after all, the Sandimmune was doing the job just fine, we reasoned. Why fix something that wasn't broken? Our transplant team supported the move, but I still went out and researched the facts on my own before making the final decision to follow their advice. Using the Internet as a research tool, it was easy to verify the benefits claimed for this new version of cyclosporine. It was equally easy to find many others who had made the conversion before me, and their experiences seemed to be either inconsequential (no side effects) or beneficial - i.e., fewer rejections, better absorption, more even levels over longer times. It is important to note that both the size and easy to swallow shape of the original Sandimmune has been maintained in this new Neoral.

We took advantage of the trade-up program offered by Sandoz and swapped our unused Sandimmune for an equal amount of the Neoral. Our transplant team monitored the change through the usual blood tests and found no level increase/decrease in my case, so the dosage remained at 200mg. twice per day (a total of 4 gel capsules), as it continues even today. I am equally happy to report no incidences of rejection since switching over to the Neoral. Having successfully migrated off the steroid, Prednisone, it appears that in my case (as is often the case for others too), the Immuran and Neoral are sufficient to achieve the desired balance of protection/acceptance. I feel very fortunate to be alive today to take advantage of this new advance in medical engineering.

A Physical "State of the Union" Message

It really is amazing to feel so full of energy after the fading energy pattern of the years immediately before transplant. Then it was almost always daily nap time. A triple flight of stairs at our daughter Susan's Chicago apartment prevented me from even attending her graduation from post graduate school - an event we had traveled halfway across the country to celebrate. I slept through it. The weakened heart just couldn't fill the body's need for oxygen back then.

This new, young heart - approximately 20 years young one doctor studying the echocariogram after surgery estimated to my amazement and delight - certainly has made a difference. There just doesn't seem to be enough hours in the day to do all the things I find myself involved and interested in. There is no problem getting up early and the energy is still high come 1am later that same day as I sit and write like this. Often people ask if I am back to work. It is with delight that I reply that I've been back to work since March 1st of 1995, just 4 months after the transplant surgery. One month after transplant surgery I was ready to participate in a local cardiac rehab program involving monitored exercise 3 days a week. This program lasted for 12 weeks and instilled a lasting habit (not that keeping that habit up has been easy) of daily exericse that continues even out to this two year point. It was interesting to discover at this program that of the half dozen participants, I was the only transplant patient. The others seemed to still have a deep fear that their original heart problem might still be there to happen again under the stress of the exercise. I, uniquely, was feeling a freedom that was based on the knowledge that I had a "new" heart. I described it as a total carburetor replacement vs. just having it serviced and the problem potentially reoccurring. The difference in attitude was remarkable between the two types of patients. While the initial reaction was "wow, you had a HEART transplant" (like this was the most extreme procedure any of them could imagine), by the end of the program it almost felt like some felt envy that my problem had been totally corrected, while they had undergone just a "temporary fix" - not really true, but certainly the perception of some. At the completion of that rehab program, I really did feel ready to return to my previous heavy work schedule, phased in over time, and I did, with the support and help of an understanding boss and lots of friendly co-worker support. Today I feel no restriction or hesitation undertaking any task at all. Its wonderful! This is not to say that those around me felt the same way when I lifted some heavy box or something equally strenuous - they were scared, but eventually overcame such concerns based on my own attitude.

The daily exercise regimen is still mostly walking. Our work facility here in Blue Bell, PA, has a large outdoor walking track, and the indoor hallways work just fine for the days when the weather is either too hot/cold or rainy. The walk is always with friends (that certainly makes it effortless and the time passes quickly as we "walk our talk") and usually about a 3 mph pace for at least 45 minutes. Again the support of so many friends commenting on the regular program is very encouraging. This is my habit at least 5 days a week, with the weekend a "sometimes" thing.

Amazing is how it felt today as I practiced for the upcoming Transplant Games to be held in Salt Lake City next week. There we were, my son, Mike, and the three of us, all transplant recipients, playing tennis in the noonday summer sun - hot (yes, we had plenty of SPF sunscreen on to protect from the danger of skin cancers) and humid. Together we represented a kidney/pancreas transplant (Faith), two kidney transplants (Jeff) and my own heart transplant - AWESOME! - and so full of an appreciation for the gift of this energy and strength. Later, we rested at a small ancient lunch spot overlooking the historic canal and shared our joint appreciation of life after transplant. While not wishing the problems on everyone, we did wish that everyone could appreciate life as it seems only those who have been granted the miracle of extended life through transplant do. It was beautiful and exciting. Faith and Jeff have been regular biking along the bike trails of Philadephia in preparation for the 12.5 mile race. I have done sporatic swim practice with Team Philadelphia at a local college pool (ok, so it has only been twice...) which is a reminder that this donor of mine was NOT a swimmer (or so I surmise based on my lack of adeptness at this sport). My only claim to fame is that I was taught how to swim some 45 years ago in Sydney, Australia by an aborigine - really!

I intend to appeal to the sympathy of the crowd at the Games for my valiant efforts, not my swimming prowess. It is expected that over 1500 transplant recipients will compete in these Olympic style competitions. I constantly remember, the goal of these bi-annual Games is to promote donor awareness, and that I think I can do just fine. Along with tennis (doubles) and the 50 meter freestyle swimming event, the plan is to be part of the freestyle relay team and compete in bowling. The realization that I am alive and able to participate at all is exciting in itself. What a difference from just two years ago laying in that hospital bed facing the other possiblities. My prayers of thanksgiving are repeated every day.

Organ Donor Awareness

I feel a desire to reach out and offer thanks for this beautiful gift of life that some anonymous donor family has made possible. Except for occasional blind letters sent to them through the Organ Procurement Organization (OPO), this is not really possible, so I find outlets for this desire by using the gift to help support others (participating in local and international transplant support groups, publishing newsletters for when I visit patients awaiting their own transplants in local hospitals, distributing free copies of this book to patients and their families around the world - recently as far away as Sydney, Australia!). In a small way this is my outlet for that need to express such deep appreciation.

In my business life, I have been known as a strong and entertaining speaker. Applying this to the goal of expanding donor awareness has also been a very rewarding experience as an extension of the educational program offered by the local OPO. These meetings are always fun, especially as the audience reacts so positively to the healthy example of transplant success speaking to them. In its own way, this contributes to my recovery as I take in their reactions as another wonderful form of medication (one with no visible side effects except maybe a slight swelling - of the head...).

Vigilance and Medical Challenges

Its a scary time, living with a suppressed immune system, especially those first couple of years. With all the warnings, watching for signs and symptoms, answering the regular questions of the doctors and nurses (not to mention the family who alertly monitor your every action for anything different, followed by their loving: "What's the matter?"), it is very easy to wonder if you are getting paranoid. I seldom paid any attention to aches and pains - they would go away over time, I was sure. Now, I was expected to constantly be on the alert, to fill in by observation for the body's immune system that was kept from working by the medications that assured life in this post-transplant world.

This can only be imagined by those around us. Only now do we realize just how amazing this body of ours is, with its automatic protection system, no longer taken for granted. A simple sniffle, a runny nose, a sneeze is "nothing to be sneezed at" and the concern level raises fast the first couple of times you face them in this new world. You listen intently at the wheeze. Am I developing pneumonia? This always happens on a Friday evening - or going into a long holiday weekend - when you least expect to be able to reach your transplant doctor. So you check on the side of over caution and a friendly nurse calls back with some questions and finally the directive to "take a couple of Tylenol and call us" if this or that happens. Whew, relief! But you still lay there as you enter the night of sleep and wonder, listening for the sounds deep inside that were so familiar before transplant. They don't come. Sleep does. And you awake to another wonderful day. You do feel foolish, at first, but there are so many stories where fellow patients didn't call and they should have. You get used to it. You get back to living the "normal" life again. As the months pass, the immune system is balanced with the regimen of meds, biopsies testifying to their effectiveness each couple of weeks, then every month, then every three months, and you look forward to the time when these will be done only twice a year.

I admit to you that it was with a little reluctance that I moved to the quarterly schedule. Firstly, I have never had a negative biopsy experience. Oh, yes, there have been rejections, but in each case they were caught so early (as promised) that it only took a minor change in meds to regain the balance between immune system protection and rejection. I'm talking about pain or any of those things they warn you about in the release you sign each time you undergo the biopsy procedure (don't read that document, just sign it and get on with it...). After some 26 biopsies to date, I found myself looking forward to their protection in knowing what was going on inside my new heart. "What if rejection started immediately after a biopsy?" I asked. By the 3-month point and the next biopsy wouldn't it be too far gone to recover from a rejection? They assured me that with each passing month, the rejection process, if encountered, would be slower, and thus they would be treating it in plenty of time even three months out. Ok, I had trusted them with everything so far, so why not this too? An so, today, I am on a three month cycle, with the 2nd annual checkup being the next one this coming October. Thereafter, it will be six months between such visits. I will miss them, believe that or not.

Living with an immune suppressed system does open one up to yet another danger: cancer. Those younger years of playing in the sun ( never went into the tanning thing...) would play a role in these later years now that the system was diminished. Yes, you are warned to stay out of the direct summer sunshine, but it really is too late. This summer I found several dry patches on my face that were diagnosed as pre-cancerous. With a simple freezing technique, these have been "burned off" - it sounds a lot worse than it is - no pain, done right there in the doctor's office, a short process. A scab forms and drops off in a week or so. Hopefully they will not return. In my case they still keep coming back so we repeat the process - no big deal. On the right forearm, it was another matter. This growth was biopsied and found to be the common, middle road form of skin cancer and this had to be surgically removed. Surprisingly simple again. Local doctor's office, no pain (thanks to the local anesthetic), cut deep enough to remove it all, 12 stitches, and "Sure you can play tennis in a day or so..." - a surprise. What little scar remains is quickly covered over by the hairy arm growth again. I do use the heavy SPF sunscreens anytime I'm out in the sunshine for my walks or yard work. And of course there's the funny looking hats - but they do protect you from more of the same, right? Now I notice the many cautions from doctors and newsletters to have regular checkups with a dermatologist and wear hats and sunscreen - funny I hadn't noticed them as much before.

Weight gain is another major challenge (I almost called it a problem...). I had been 270 lbs before the hospitalization. Over time, that came down to 202 lbs at the point of transplantation and I swore that I would never get back up there again. How naive of me. Despite best of intentions, good diets, side effects of medications and enjoying life again, I crept back up to the 263 mark in the 14 months since leaving the hospital. Jay and I have been working hard to reverse this very dangerous trend and I am happy to report that this has resulted in over 25 lbs loss to date. Weight Watchers was our tool and self-discipline and education continue to be the challenge. The goal is back to that 202 lbs again. Its a long way to get there - one pound at a time. The exercise helps. The tasty treats do not.

Let me say there is a fine line between being over cautious and being vigilant. As one so aptly pointed out on the Internet's Transplant Newsgroup, you got the transplant to not just stay alive, but to be alive! You will have to find your own way of living on that fine line. Just remember its a precious gift that has been entrusted to you, but don't just bury it safe in the ground, live it every beautiful day and share it with those around you with confidence and love.

Life Lessons

There seems to be so much different in this post-transplant life of mine, most related to something I will call "life lessons." What this means is that there seems to be an appreciation for life and the gift that each day represents that has grown even stronger as a result of this experience. In dealing with many other transplant recipients, I find that I am not unique in this feeling. Even those of us who had a very strong, positive outlook on life before, find it to be more intensified now. Sure, part of that stems from the "close encounter" with death. It also comes from the acceptance that an unknown stranger (the donor family) has passed on this gift of life to me, someone who is a stranger to them. This opens one up to "seeing" things in life very differently. These things may happen in everyone's daily living, but now we who have been transplanted seem to focus on the deeper meaning behind such happenings. Let me share just one such example from many...

A CHANCE ENCOUNTER?

So many of us survive the transplant experience with a feeling that we must have been given this "second life" or "extension on life" for some special reason. Well, at least I do... Every so often (actually frequently) something happens that just seems too coincidental to not be a part of the answer to that open question. Let me share such an encounter that just happened to me in the hopes that you too are having such "being alive" happenings in your own "post-transplant" life and might be inspired to share such stories as help for those waiting or facing their own decisions regarding transplants...

Here at our corporate headquarters, there is a credit union office that infrequently has "outside" customers visit it for their money transactions. Waiting in line the other day, I found myself in one of 3 lines, but mine wasn't moving very fast. I waited patiently as the customer talked at length to my teller, finally leaving. As I stepped up and said hello, the teller explained how bad she felt for the previous customer. She related that as a nurse, the customer was very broken up by the news that they had just lost a 16 year old patient that morning. (odd, how often has a teller told you about the story of a customer's tale like that?). I expressed sympathy. The teller continued: "and he had had a recent heart transplant." Being a heart transplant patient myself, my interest picked up even further and I found myself asking where the nurse worked. The teller didn't know - not that she should share such information anyway, right? - but then she looked at the deposit just completed and found it to be a payroll check, so she was able to tell me the local children's hospital where the nurse worked. With that I was moved to ask for her name, again not information that normally would be given out, but the teller again looked and relayed the nurse's name. Why did I ask? I don't know, but I made a hasty decision to run out the corporate entrance and try to catch her before she drove out of our huge parking lot.

Imagine my surprise to find this nurse (still a stranger to me) in our lobbly talking to an entrance guard. I walked up and called her name. She turned, tears rolling down from behind her dark sunglasses, as I introduced myself as a heart transplant patient who had overheard her sad news. "Could we sit and talk?" We did and she shared the fuller story. She knew better than to get emotionally involved with patients, but "he had been waiting for 6 months on the ward under her care." "How was she going to face going to work there in just 3 hours?" Her tears continued, as my own eyes filled in compassion for the pain she was going through. I explained my own recent decision to write to my nurse/doctor team, urging them to continue to be emotionally involved (despite the risk of such pain), explaining how much it meant to us as patients. I held her hands as I expressed "thank you" on behalf of myself and so many of my fellow transplant patients who had received such "above and beyond the job" personal care when we were undergoing our own challenges. We too infrequently get the opportunity to be there to say such thanks when it is really needed like this.

I went on to share the images from the 94 Transplant Games video showing young people after transplant living life to its fullest. She mentioned another recent patient, Christopher... I interrupted to tell her that I had been with him just the afternoon before (part of my regular hospital visits with patients awaiting their own transplants) - that he was full of life and smiles - having received his own heart transplant just the month before - after surviving on an LVAD for many months after transferring over from her hospital for such specialized care. I had met him the very day he had transferred (again by coincidence?) - noted his 14th birthday in the weekly newsletter of that week - congratulated him in yet another issue when he received his new heart - and now he was back in for a pacemaker to help that new heart. she couldn't believe the coincidence. I assured her that Chris was doing fine. I offered to sent her a copy of that Transplant Olympics video, for her own healing and inspiration, and also to share with other kids waiting in her hospital. She smiled as I related the scene of that tiny youngster stopping just short of the finish line in the race - ignoring the shouting crowd to take the extra step - how he got a medal for his age group! We stood up and I offered to support her with a hug. She accepted. We stood and cried in each others eyes as I expressed my belief that her young friend, Desmond, must have reached down to help her in her moment of pain by sending me - out of this stiff, business-like, corporate environment, to be there for her - when Desmond couldn't be there himself in person (but in spirit). I think spirits can do things like that in our lives, don't you?

We shook hands and parted, her out to the parking lot, ready to help the others face the tragedy of Desmond's story back at the hospital - the young patients, the scared families, Desmond's family, the staff, etc. - I back to my business office (although I admit that I didn't get back into the business - just before so important - for quite some time).

Zelda (that was the nurse's name) called just the other day to say she had received the video - loved it - and was taking it for her young patients to view. If you care to share your own "Thanks..." to Zelda for all those who have meant so much to your own life today by "being emotionally involved" - I will pass on any such e-mails to her that I receive from you.

While this is just one minor example, let me assure you that such things happen very frequently. At least twice over the past year I have been "in the wrong place at the right time" - my plans were very different from where I found myself at a particular moment. In both cases I was the only one there who could reach for the medical help that a waiting transplant patient needed on an emergency basis to stay alive. I can't count the number of "coincidences" where something came into my immediate surroundings at the precise time that another person needed just that support and couldn't find it anyplace else. The metaphors of angels that are sent to help us has become very real as I have related in other parts of this book - i.e., the butterflies that Bill and I experience so often that seem to represent his son (my nephew) coming back to us long after his death from leukemia. That beautiful elusive red bird, the cardinal, a favorite of my recently departed mother's, shows up at times of special meaning again and again, in both my life and others close to her in life. Just the other day, as described earlier, after that practice session of tennis with two fellow transplant recipients (it was awesome - the three of us represented 5 transplants on the courts - 3 kidneys, 1 pancreas, and my own heart... and we were playing a very energetic game in the noon-day sun - with SPF 30 on, of course - "Wow!!" is all I could say to myself), we stopped for lunch overlooking the old canal. As I related my story of mom and I experiencing the "Hitting a 30 -and with an H-wave no less" (as told in an earlier chapter here...), a brilliant red cardinal came and stopped on the railing within 5 feet of our table. Only for a moment... then it flew off to a tree branch - still close by and at our eye level - remaining there as I explained to my audience of two what my amazement was all about. Together we recounted other such experiences among us. No one was a non-believer. We could all relate to what we had just seen. Mom was ever there, just as she had been throughout my own heart transplant experience, and as she was for my nephew's losing battle with leukemia. She passed away, as I have told you elsewhere, between the time of my life saving transplant and Jake's premature death - a span of just 6 short months. Mom had been there for us then, and reminds us even today that she is still there for us now. I'm sure you have your own angels helping you through the challenges you face too - just be open to their support, OK?

People

While I have been blessed with many beautiful people in my life, there have been so many more that I have encountered over the past year, I just had to add some brief mention of just a few here.

The TIMMAN

Let me start with Tim. Tim was a young man whom I befriended last year when he was awaiting his own heart transplant at HUP. After his return home last summer, I found him again back at HUP this spring, facing a rare form of rejection that couldn't be reversed with meds. He was now awaiting his SECOND heart transplant! He was so special. He was the seasoned veteran who gave the other "first-timers" the benefit of his experience. How could they be afraid, here was Tim unafraid, going at it for the second time. Many months passed. I found other local heart transplant patients who were "doubles" themselves to call and offer him their words of encouragement. Based on a recent heart transplant dinner-dance where I had come across patients with "double red carnations" (we had only 1 carnation to symbolize our heart transplant - I asked, and yes, the double meant that person had had TWO - awesome!) it had again been "very coincidental" that I was able to reach 4 such patients who were glad to call Tim.

His condition worsened, becoming more withdrawn each week when I stopped by to visit him. He kept in touch as the "Timman" writing to me, the "Heartman" via e-mail. We watched as others, finally, went off to get their new hearts and eventually move out of the hospital unit for cardiac critical care patients. And still Tim waited. He finally "broke the code" - the patients figured out a pattern. Every time the hospital came up and mopped and rewaxed the rooms, that patient would "get the call." Could it be that simple? To be honest, I don't remember if Tim got his room rewaxed just then, but ... His mother, Joan, stood by his side until finally the call came - and he honored me with a call to come join him as he waited the final hours until surgery would begin.

Let me assure you that the second transplant is a lot harder than the first. And Tim (and his family and the HUP staffs) fought to make this one work. Kidneys failed. the new heart just didn't want to work. They kept him sedated and we all prayed and waited. It didn't look good. Then about a week later, the news was that "the Timman was up and around" - amazing! He went home some weeks later and at the time of this writing is doing as well as can be expected given the ordeal he had undergone. We sold raffle tickets to support Team Philadelphia going to the '96 Transplant Games. While not a tough sale, still a couple hundred dollars worth was quite an accomplishment. Tim, from his hospital bed over those months, sold more than anyone else - over 2400 tickets - winning the prize for the most sales - a pair of free airline tickets to anyplace in the US. Wow!! I can't wait to see where he decides to travel to once that heart is ready for the trip.

A Friend from "Down Under"

Some time back this past spring, I found that one of our company's general managers found himself stuck in Australia, too sick to be transported back home to the US. He needed a new heart. Naturally I sent him words of encouragement and a copy of this book. Well, word just arrived July 2nd that he got his heart transplant and is doing great! Congratulations, Bob. We all look forward to you getting well again so you can come home.

Coincidentially (?), shortly thereafter I came a cross a posting on the Internet Transplant Newsgroup where a transplant coordinator from Sydney, Australia, was asking for contacts here in the US. Seems she has a patient who just received his new heart July 2nd wanting to come back tohis home state. I guessed it must be my friend and fired her back an E-mail asking if the world could be so small.

A response came back! Yes it was Bob, and he had shared the book with her and she expressed her enjoyment at reading it. Wow, my book was really traveling the globe! In response to that e-mail, I called down to Australia to talk to Annmarie, the transplant nurse who posted the e-mail. Got in touch with the hospital at 7am in their morning (5pm our time - the night before..). She wasn't at work yet, so they patched me through the hospital phone system to her mobile phone and the next thing I knew I was talking to her as she was driving to work in her car!! What a small world. I'm humbled and amazed)

An October update to this story. Just the other day I learned that this "down-under" friend, Bob, will be returning to his home area in Atlanta next week. How great it must feel to "come home" with a new heart like that. "Welcome home, Bob!"

October 23rd update: Got a call from Bob this morning. He was up from Atlanta visiting our corporate headquarters here in Blue Bell, PA, just down the hall from my own office. He says to say "Thank you!" for all your prayers and support. He too is doing great and has just returned from traveling around the U.S. visiting his family. Wow! How emotional that trip must have been.

U.S. Transplant Games Report

Dateline: Aug. 21-26, 1996
Salt Lake City, Utah

Team Gleason (Jay, Mary, Charlie and Jim) traveled to SLC recently to participate in their first US Transplant Games at the Univ. of Utah campus as a part of Team Philadelphia. Where to start?

Well, how about WHY. Every other year the National Kidney Foundation sponsors (along with several corporate sponsors like Sandoz, the company that makes NEORAL to protect our transplanted hearts from rejection) these Olympic style athletic competitions to promote organ donor awareness. Over 1200 transplant recipients gathered there to compete in events like field and track, swimming, basketball, tennis, bowling, badminton, golf, bike racing, etc. The media is invited to cover them extensively, so you may have seen TV and local newspaper pieces over the last two weeks. The world thus gets to see that life after transplant is very energetic and normal.

It really is awesome (and that's the best word I can come up with to describe the experience and emotion of it all...) to see so many - from 1-1/2 years old to 77 years young - doing things that just a couple of years earlier any of us transplanted would have seen as impossible. I point out that this was done under bright sunny skies of the desert 100 degree temperature, at an oxygen-thin 5,000 foot altitude!! The opening and closing ceremonies, modeled after the "real" Olympics you saw from Atlanta just a few weeks back, were so emotional for everyone. Fifty-five teams from all over the country paraded into the Huntsman Arena there at the Univ. of Utah - with most being composed of from 2 to 60 members, all transplant recipients, some from as much as 20 years ago - what an inspiration to us newcomers (like me just going on 2 years since my own heart transplant). Then there was Team Philadelphia - 128 strong!! What a grand entrance - the largest team again, for the 3rd time. We were awesome and so spirited. So proud - yet so humbled by the realization that it was the gifts of anonymous donors that made it all possible - and the main floor of the arena was filled with many such donor families. Let me assure you that you were well represented and I hope that in the years to come you too may join those ranks and make that team even bigger in 1998.

I really can't do the story justice within the confines of this short article, but if you catch me one-on-one, I can be persuaded to tell the fuller story - just ask! Some highlights . . .

First, lets get the obvious out of the way: No, I didn't win any medals, but a lot of Team Philadelphia sure did. (I'll give you more details when the results get tallied, but rest assured that Team Philadelphia did capture the most... just wait until the video comes out, and I'll bring it around for your viewing - with support of my story telling, OK?) I did do very well, by my own terms. I really am not an athlete, a point I made early on in volunteering to participate in the Games. Their goal was promoting donor awareness, and that I felt ready to do.

In the 50 meter swimming, men, ages 46 through 55 (a group I thought would be sparsely represented, thus giving me a chance - not so, as over 45 opted for this event), I found myself getting ready in front of a large crowd of spectators - including Jay, daughter, Mary, and father-in-law, Charlie - named "Team Gleason" in our local newspaper (several local papers had nice articles on our participation) - and the nervousness in my gut got worse than it was when I went down to surgery for my heart transplant, really! There I was, crouching on the starting block (heat #3, lane 7), as the starter called out: "On your mark...." - then "GO!" - as I remained at the ready waiting for the expected "Get set..." that never came.... belatedly jumping into the water I never did catch up with the others who had hit the water on the command of "GO!" My family was way up there... yelling "Get in the water, Jim..." Anyway, I did swim the entire length and back, and got out of that pool under my own power - quite an achievement for me, who's only claim to fame is that I was taught how to swim by an Aborigine when I lived down in Australia back in the late 40's (really!). Our other swimmers, Trish (with 5 medals), Elizabeth (with 5 more), 17 yr old Aaron (heart transplanted at CHOP 1 week after my own) and others, did much better - but then Aaron works as a lifeguard all summer - all I do is write these newsletters for you. That night we celebrated by doing the Macarena - which I did lead!! (No, that Aborigine didn't teach me how to do that dance...) - again, and again. What celebration, what fun, what energy - what a beautiful night under the glowing moon. There we sat and heard various stories of one miracle after another - even about one Philly man who got to hold his own heart (after its replacement with a new one of course) "just for 10 minutes..." he said. I can't imagine anyone being able to say that. Just imagine that... asked how he felt about the experience, he described it as "Erie..." We listened, spellbound.

The next day it was the bowling venue and I was lucky to bowl a 116 in the first game. This was followed by a respectable 174!! Pretty good, huh? And I couldn't break 100 for the 3rd game, that oxygen was so thin (I guess...). Hey, the guy I bowled with got a 237 his first game, and by the 3rd he couldn't break a 100 either - and he was a bowler! There were a lot of over 200 games. I stood back and was amazed as I felt the energy of 200 bowlers throwing those big, heavy, black balls down the alleys like that. Wow!

In between events, I joined the TRANSWEB site support team, under my friend, their webmaster, Eleanor Jones (a pretty, young, red-haired lady...) for signings of this book, A GIFT FROM THE HEART. We gave out over 200 of them to patients, family, donors, and anyone else with an interest. Each one of them had their own beautiful and emotional story. As just one example, a healthy looking gentleman came up and told how he had enjoyed reading the book as he waited in his hospital bed there in Salt Lake until just three weeks ago. That's when he finally got his own new heart!! - just 3 weeks ago! We hugged and cried tears of joy together. We spoke and thought of you back there at HUP, Temple and Hahnemann hospitals awaiting your own turns at this miracle of new life. We joined in prayer together - of thanksgiving for being alive like this, and for you, that you might have the same success as we were enjoying.

Still later, a donor family stopped by to get a copy of the book. Gary and Carol had come in from Colorado and found the Games experience to be emotionally overwhelming. We talked - they explaining feelings from the donor's side - me sharing the emotions from the recipient's role. They wished they could hear from their recipient. I told them of my writing to my anonymous donor. I asked if I could "adopt" them as my donor family. They loved the idea and we hugged and cried together as the TransWeb team looked on, gaining an even deeper understanding of what it must be like. Bob, one of the TransWeb support team, would go on to use this incident in his later presentations about the Transplant Games experience. Recently Carol wrote in a letter: "I took the two copies of your book and we returned to the Campgrounds where we were staying. I read your book that evening. I can't tell you how good it was to finally have an understanding of what an organ recipient goes through. We both have a much better understanding of what happened to you all the time." She continued: "I had truly thought the tears were gone - Oh, how wrong we were." I found myself crying again as I read her beautiful letter.

That night, it was time for karioke - and more dancing the Macarena. What did we as Team Philadelphia sing, you ask? Why "Philadelphia Freedom" of course! And the crowd cheered! It is still amazing to me to think that we were getting up at 5am (to take meds on the 7am east coast schedule) and partying til midnight. What energy! Couldn't help but think back to just about 2 years ago when life was laying there in the bed at HUP, no energy to spare, fighting to stay alive until that heart became available. Like I said, AWESOME!

The final event for me was a double tennis match. Eleven a.m. in the hot morning - 100 degree weather - like I said before, almost a mile high - and, after a hard fought match (we lost 8 to 2...), I felt ready to play two more sets!!! Instead we went around to cheer the other members of Team Philadelphia on in their own competitions. Like I also said, THEY won lots of medals. One close friend, Faith, even left on the Monday morning flight not realizing she had won a medal in her biking race. The results weren't posted until later that day. Imagine her surprise when she got the call at midnight when friends called upon their return to Philadelphia to tell her the great news. Everything was so emotional, especially the honors given the many donor families who were with us. All 1200 recipients wanted to get up from their seats and just go down and hug each family! Instead we sat and cried as a montage of pictures was shown on the big screen - pictures of donors who had passed on the gift of life to recipients like us. Speeches of greeting and inspiration were given - and we all cried some more. At the closing ceremonies Sunday night (held in the great Delta Arena), we all stopped for a moment of silence and prayer - remembering those who had died waiting their transplants, those who had passed away since the last games back in 1994 - as they lit up the top rows of the arena showing the empty seats representing so many friends no longer with us. And the tears flowed yet again. But this was a celebration of life, and after the games were closed, the singing went on well into the night - and of course they danced the Macarena (again). We all promised to return together in 1998 - hoping that you too will join us at that time, competing in your own events, and dancing the Macarena with us, right?

I mentioned the timeliness of meeting Joe at just the right moment above, well how about a couple of additional "coincidences" (and you know that I have a deep faith in a Divine power that lets me see these as much more than coincidences).

Friday before our trip, Miriam, a recent transplant herself (got a 16 year old heart at HUP 4/18/96, call her "sweet sixteen" now...) sent a clipping about Amy, a 5 year old who received a double-lung/heart transplant at the age of 3, followed by another double-lung again last November. I enjoyed the article and noted that Amy was also on Team Philadelphia, with hopes of doing the long jump and "running real fast" to win medals out at the Games. The article included a pretty picture of this smiling little cherub and I though nothing more of it. Later that same evening there appeared on the Transplant Newsgroup out on the Internet a posting from very concerned parents whose 3-year old daughter was being listed for the same condition and transplant at the Univ. of Pittsburgh. They were asking if anyone knew anything about what they were about to go through and could share insights as to what life would be like afterwards. Wow, the article was just what they needed. I posted a reply, offering to mail them the clipping if they would forward a mailing address. By Tuesday night I was concerned that I wouldn't hear from them before we left on the 6 day trip. But then, at the last hour, an e-mail explained that they had faced a "close call" Monday (the doctors had come out from an emergency cath on her to say that the heart was acting up and she might not make it...). She was a fighter, her father explained in the note, and fought back and was now stable with a 30 to 45 day window by which she needs that double-lung/heart transplant to stay alive. I immediately put the article in the regular mail, and went off to the Philly airport with hopes of somehow finding Amy out at the games. Now you have to realize that Team Philadelphia was booked across 8 flights over two days, so my best hope was somehow to find them among the 3,000 people gathered in SLC. You're probably no more surprised than I was to walk up to the crowd awaiting boarding of the first flight and there was this little one with a T-shirt that said; "GO AMY" on it. There in the chair beside her was the same face I had seen in the article, Amy herself. I walked up to the obvious parents, Ingrid and Lenny and introduced myself and my mission. Sharing the e-mail with them, they too were surprised at the similarities of the two daughters' conditions and agreed to try to call the father at the Univ of Pittsburgh Children's Hospital as soon as they arrived. Amy became the darling of the flight as she and her sister filled the plane with life and smiles of love. The next morning we ran into Ingrid and the two girls who explained that they had been too busy to call just yet. At that point, the father joined us and relayed how he had talked for half an hour ("oh, sorry dear, I didn't get a chance to tell you yet...") with his counterpart in Pittsburgh and how glad that father was to hear from him. The opportunity to hear the success story just couldn't be timed more perfectly, what with their recent scare. He just couldn't get over that Amy was going to be competing at the Games and was doing so well (just imagine yourself in the situation and your eyes will fill up like mine did as I listened to the story unfold...). Coincidence? I don't think so...

(Another update to this story: Amy is back in the local hospital, still fighting a lung infection since her return from the games. I have visited with her and her lovely mother several times since the games and can assure you that Amy will conquer this one too, just like she has so many other times before. "Way to go, Amy!")

Story #2

Picture the crowded opening ceremonies out there in the huge arena. The teams coming in from the underground tunnel, each parading into the spotlight and cheers of the crowd, TV and videos everywhere, in comes Team Philadelphia, 128 athletes strong behind the flags and banners of the states we serve - we file up the steep stairs of the arena to take our seats - crowded stairs - masses of people going up there - and one lone guy trying to make his way back down this stream of people (returning from going back out to get his camera from the car...). I'm watching the steps, head down, when I come eye to eye with this one person's name tag. I see the name: BRUCE JAY. Wait a minute, Bruce Jay? I know that name! I glance up and come to recognize the tanned and surprised face of the young man standing above me on the stairs. He was our neighbor some 11 years ago up in Albany, NY! We exchange surprised hugs of long lost friendship as the crowd works its way around us. He had a kidney transplant about the same time I had my heart transplant. He is prepared to compete in the swimming events. Of course, I remember now, he was the life guard and swim team athlete back then. The next day, again we somehow run into each other at the swimming venue. Bruce wins 3 gold medals there while I have a fantastic experience myself just competing at all.

Ok, one more story, this one about the same Miriam mentioned above. Did you see that Learning Channel special on the heart transplants last Monday? I missed it, but Miriam didn't and as she and Lou watched they came to realize they were watching their donor's story unfolding. She knew her heart came from Atlantic City and that the donor was a 16 year old girl who had been killed in an auto accident. There, in the opening scenes of the show, a mother and aunt anguished over the decision to donate the 16 year old daughter's organs following an auto crash there in Atlantic City. The mother couldn't do it. The aunt asked her to consider what if it were her own family that needed the organ. The mother gave in, with the words: "I sure hope whomever gets them will take good care of them..." Miriam watched in amazement as the surgery scene unfolded with the heart beating - the clock on the wall showing the time - the date was March 8th, 1996 - the day and time Miriam received "the call" - the heart was placed into the familiar red and white cooler with the Hospital of the University of Penn markings. This was her heart! She was watching the story behind the scenes of her own transplant beginnings - now 6 months post transplant. That heart beat so strongly as she sat there in amazement. I know what you are asking, did she contact the donor family? Its too soon to know - remember this was just a week ago. God does work in such unusual ways, huh? How would you feel? What would you do in the same situation?

(An update to Miriam's story: We just got her a copy of the video program by posting this story out on the Internet and asking for help. A new friend from Richmond, VA FedEx'd a copy for her. From that video we found the name of the DVTP Transplant Coordinator nurse and arranged a visit to meet her. Wow, talk about emotions! It was beautiful...)

Well, that's about all for now about this great trip. Like I offered before, if you want more, just stop any of the Team Gleason members and mention the trip. Each of us will give you a totally different story but I assure you, we really did all attend the same event. It was great!!!! Hope to see you at the next games in 1998 with your own new heart.

The Second Anniversary

Now on to celebrate the second anniversary of this great new heart - Oct. 19th! Wow!! I can hardly believe it. I hope that his chapter has given you some insight into what life has been in this "overtime period" in the game of life. It really has been wonderful and I am so happy to be able to share it with you like this.

October 19th falls on a Saturday this year. Each Monday evening I enjoy a very special visit with a 90 year old priest friend here in our local church. He is a real inspiration in how to live life fully and serves as my spiritual advisor. Oh how we laugh as stories are shared each week. Often we talk about you. We close each visit with shared prayers for your safe passage through this transplant experience. Well, on October 19th, Jay and I will attend a very special mass offered by this wonderful priest. A private mass with just the three of us there. Again, along with our many prayers of thanks, you will be among our intentions, both in thanks for your friendship and support, as well as for your health and recovery. Please keep us in your prayers.

As I sit here close to midnight writing this final (?) chapter, I can't help but think of my own departed mother's birthdate coming up this week. She was not only my mother, but my nurse and special friend who stayed with me through the heart transplant and initial months of recovery. It was only after being sure I would be OK, that she accepted her own passage from this life to the next. I know she is here with us now as you read this, ready to stand by you as the nurse she was in life. I hope that parting thought is as comforting to you as it has been for me over the years since my miracle of the transplant.

Tonight there was a special show on TV to celebrate the 30th anniversary of the Star Trek stories. They closed with two phrases from Star Trek which seem so appropriate to this final chapter. Let me part sharing them with you for whom they have so much more meaning now...

"Live long... and prosper!"

and

"Lets see what's out there . . . Engage!"

May you enjoy your new life as I am now. Be alive....!

With HEARTfelt love, prayers and support,

- Jim

One more story? PS: Butterflies are Free!

Speaking of butterflies, they're all over our kitchen in fact. But let me back up first and give you some background. As recounted in earlier writings, since my brother-in-law's son, Jake, died a year ago of leukemia, butterflies have taken on special meaning in our lives, often fluttering in and out at the most appropriate times, bring us to develop an even stronger faith in their symbolism as "angels."

Well, Saturday was my own 2nd anniversary of this heart transplant and my wife had warned me to "not open the Federal Express package" on our front porch until she was there to watch. My curiosity was peaked, of course. Just before arriving home from work that night, I figured out what it was: the hospital was supposed to be Fedex'ing a 24 hour urine collection bottle to go with my annual test program the coming Monday. Boy, was Jay going to be disappointed when she saw what was in that box. When I got home she was ready, video camera in hand, as I "bragged" about having figured it out, and I explained my insight to her. "So, go ahead and get it then..." she directed, as she turned on the camera to record the grand opening of the urine bottle. As I picked up the suitably sized box, it's lack of weight confirmed my guess even further. Imagine my surprise when I opened up the outer box in our kitchen and found the "urine bottle" gift wrapped inside. Opening up the gift wrapped shoe box revealed over a dozen live monarch butterflies!!! They quickly adjusted to the warmth of the kitchen and started flying towards the lights. Boy did we laugh! How do you get a bunch of lively butterflies back into their box? Very carefully and slowly. Often another one would fly out as we tried to put another back in. What a neat gift from my sisters and brother and their families. Seems they had ordered them from a local "butterfly farm" special for the occasion. Wow, never knew there was such a service. Now what does one do with a "box full of butterflies?" you may ask. We did too...

As it turned out, the next day a friend from Team Philadelphia and the recent transplant games passed away after a short illness. We gathered her friends together and released the remaining butterflies to the open skies in her memory after the team reception in downtown Philadelphia Sunday afternoon. It was sad, but oh so beautiful. Mary Alice would have liked that, we all agreed. Did you notice a butterfly (or two) flying by your hospital windows that afternoon?

We also sent some of those butterflies to our young friend, Amy, as she lay in a local hospital fighting her own battle for life. We sent her a gift of a couple of those live butterflies in a Japanese "cricket cage" this past weekend. It seemed like a neat thing to help lift her spirits - butterflies for a child in the hospital, huh? I just hope some nurse doesn't look at it another way: as insects being brought into the Intensive Care unit. It sure does sound better that first way, doesn't it?

As Bill writes in another of his poems after his son's Jake's death:

My Golden Winged Butterfly

I asked the wind to blow my pain away,
I asked the sun to dry my tears.
They worked in perfect harmony
And carried my answer near.

I recognized at first sight
As two golden wings flew by
That my doubts and hurts would be carried away
On the wings of this butterfly.

Now as we reach November
And most of the flowers have died
I stand each night with hands outstretched
And stare at the sky and cry.

I know that when the morning comes
And the sun rises up in the sky,
He will come once more to comfort me,
My Golden Winged Butterfly.

Wm. W. Kolacy
written during the period when Jake (Bill, Jr.) was sent home from the hospital given no hope for a cure