Part 5: Some Days Are Diamonds

Part 5 (5/95) of A Human Heart Story, a five-part book about one man's heart transplant, from initial diagnosis through recovery, by Jim Gleason, reborn on Oct. 19th, 1994. Note: taken from the Gleason Gazette family newsletter with editing for general readership.

Written at home - May, 1995

John Denver's song seems to capture it so well - and today is another one of those "diamonds" - just bright and springtime beautiful - the sun dancing between huge white puffs of floating clouds across the Pennsylvania countryside. So many have asked, "How are you feeling, Jim?" Let me respond with words from yet another John Denver song:

"I want to live,

I want to grow,

I want to see -

I want to know -

I want to share what I can give -

I want to be!

I want to live!..."

And through the gift of my donor I am being given the chance to do that - and its exciting. Too often we take for granted this gift called living - given a second chance like this, you tend to not take life for granted and I will work hard to make sure that doesn't fade with the passing of time.

Final Report

Well, this may be the last installment in a trilogy on experiences in my ongoing recovery from the infamous heart transplant. All major milestones have been passed to date and life has returned to about as normal as it is going to get - and that's pretty damn good! Exercising regularly , back to work, heart rejection overcome (at least the first time), biopsies have become second nature (and continue on a regular basis), steroid medications being further reduced (lessening the side effects too) - the story just starts to get boring for my readers, so you have to know when to stop, right? Well, bear with me just this one final time, and enjoy the new found life as I now know it - really very exciting, believe me. If that excitement doesn't come across as you read this, please excuse my writing skills, because I live that excitement every day and you and my many family and friends who have stood by in support know what I'm talking about from our personal conversations, right? Go listen to that John Denver song - playing it loud - what beautiful celebration - then you'll have some insight into what I'm trying to say here. As I've said before, but it still bears repeating: "Life is good!" - and I'm here to remind you of that beautiful view of life. So much for philosophy, now on to some facts . . .

Back to Work

First and foremost (because you and so many have asked...), yes, I am back to work at Unisys effective March 6th - that's almost 6 months since leaving work (with no expectation of ever being able to return, obviously mis-information on my part), and 4 months since the transplant - and it feels great!! Especially because so many have greeted that return with such amazement and enthusiasm - and I do join them in that amazement (if only we all could remember to greet each new day with that same sense of amazement, for each day of life is truly a miracle - you shouldn't have to go through this close call with death and a heart transplant to appreciate that miracle - even if its just a look up to Him and a simple word of "Thanks!" each rising morning). My own organization celebrated this return with a sheet cake and personal posters on all the doors - overwhelming! In His own way, God kept things from getting too out of hand by constantly reminding us all of the "gift" that life is since just the night before, another of our fellow workers who had returned from his own open heart surgery a year ago, died of complications that previous evening. It was an interesting combination of emotional high/lows for everyone. This status report is both a special thank you to all my friends in EUCS and, at the same time, a memorial to our fallen comrade, Ray Robinson. Blue Bell is a large Unisys campus of 3 buildings and over 2500 people - and it seems as if each and every one of them has stopped to say "Hi, Jim - its great to see you back!" - what a beautiful family to stick by you through all this. And then there is the global family that is Unisys worldwide - they too have never ceased to amaze me with their support over these past six months. My words of thanks seem so inadequate, but I'll just keep saying them to you and everyone: "Thanks! What a gift you are..." I only wish that I could give everyone the gift of the joy I feel in going to work. It really is very sad to see how many fellow workers do not share that view. Life is really too short to do otherwise.

At Unisys, my job is again that of Program Manager for the worldwide rollout of the End User Computing Services (EUCS, as so many know it). No, there isn't that extensive traveling in the forecast that mom and I were so used to - as least not in the foreseeable future. If some does come up, I look forward to it with a sense of new adventure. Sadly, my traveling partner, and private duty nurse, mom, recently went off on here own adventure - this time without me. She passed away suddenly - without pain or lessening of her legendary spirit or energy - after 77 years of enthusiastic living and cheerful giving. I feel so privileged to have had the chance to spend such quality time with her in recent years - first in our international travels together - to Australia, England, Scotland, Ireland, the Netherlands, Sweden, and Denmark (she was quite the traveler, despite painful knee and leg problems) - why, we even stayed in a 14th century castle in Scotland - talk about your once-in-a-lifetime experience (my thanks to Joe & Sheila Peters for making that suggestion)! In September mom came and supported me through this heart experience - with her 50+ years of nursing skills (not to mention mothering skills). She won the hearts of many at the Hospital of the University of PA, and I was especially proud to have her meet Unisys friends who came by for weekly lunches during the long months of isolation (and visitors, you did wash your hands... thanks for your understanding) during the home healing time of November through February (wow, was that only 4 months?) I can only share with you that her last day was spent in laughter listening to Lake Wobegon tapes - and while we are all sad in missing her, what greater gift could we wish for someone than to experience the transition to that better life with full facilities, no pain, and amid family and laughter - sounds like some type of Irish blessing, doesn't it?

Pain and Thanks

Many of you have heard me talk of my nephew, Jake, and his year-long fight with the dreaded Leukemia. He was such an inspiration throughout my own challenge - even asked his doctors if he could give me his own heart in the event he didn't make it. Wow, talk about emotions - have someone offer you that when you need it! "No greater gift ..." Jake would call me as he faced such painful treatments and ask; "Uncle Jim, how did you handle this pain?" How could I admit to him that throughout my entire experience, I never knew pain. People undergoing kidney transplants - I'm told they know what pain is - especially the donors. Those who undergo open heart surgery for bypass or valve work on their hearts - they experience more pain than one who undergoes the awesome heart transplant. Doctors tell me it is one of the easiest of the heart operations for them to do - I'll take their word for that. My experience couldn't have been more positive. Dr. Loh, head of the heart transplant team at the Hospital of the University of Penn, his assistant, Dr. Kelly, Dr. Akers, the heart surgeon who performed the transplant itself , the transplant coordinators, Heather and Kathy - what a team! The nursing and support staff in the coronary care unit are second to none. More recently the ongoing bi-weekly biopsy work (remember the detailed description of that heart scraping procedure in status report #2 - enough said...) is done by the doctors and nurses in the catheterization lab and after about a dozen experiences I can't say anything but the highest praises for their painless, friendly and professional work. If all of this sounds like a commercial, you bet it is! I couldn't recommend a finer support network of loving and caring support (of course, I hope you never have to meet any of these people, my very special friends, in their professional roles).

Healing and the Mind

"44 pills a day? Piece of cake!"

- a quote from Uncle Jim

Let me assure you that the patient's mental attitude is also a critical factor in being able to look back and reflect on everything as such a positive experience, even with a daily regimen of 44 pills! Some of those pills are "horse pills" (i.e., big enough to choke a horse...) - Jake and I took pills together as I tried to show him how the mind can overcome the mountain of pills problem. Even when those pills are broken in half, swallowing was a major problem until the mind was mentally set to accept them.

When you speak of medications, you have to speak about their side effects, and when you mix 14 different Rx's together, you DO get side effects, and for each individual those effects are different. I have been extremely fortunate (how much of that is due to the positive mental outlook and discipline I really can't tell you, but I believe it makes a big difference) in keeping such effects to a minimum. Hair grew in places where it never had before, and extra heavy and wiry in places of normal hair (my wife keeps being amazed at the amount of gray hair today...). This is not an easy side effect to handle for women - so I'm lucky there. Then again, when I talk to cancer patients undergoing chemo therapy who loose their hair, I again count my blessings. The "chipmunk cheeks" so characteristic of the steroids was minimal in my case - and short lived at that. The weight gain mentioned elsewhere was the most dangerous, and it was surprising to find that I couldn't maintain the wonderful weight loss from the hospital waiting period (total in hospital of 6-1/2 weeks), but finally am turning that back around now with a very disciplined nutrition program. The mental side effects of the steroids and their impact on relationships were described in my last report, so I wouldn't repeat them here. As we have had recent re-unions with the 3 Heart BEATS (remember the 3 of us waiting for hearts together known as the Bodies Eagerly Awaiting Transplant Surgery - and we all got our new hearts within 1 week of each other) it was surprising to find some similar patterns in the side effects, but at the same time, each had different ones and to different degrees. It was great to congratulate each other on the 6-month anniversary of this "new birth" - Keep it up, Ron & John!!

Scientists have proven that a positive, take control, mental attitude improves the body's immune system significantly. That sounds good, doesn't it? But I don't know if it works counter to the immune suppression process we are working so hard to maintain to prevent this new heart from being rejected. All I can tell you is that our amazing immune system is very complex and somehow seems to be doing the right thing for me at this time (thank God!).

Well, sadly to say (again), just 3 weeks after mom's passing, 26 year old (young!) Jake, the one who came up with the name, the 3-Heart BEATS, was finally overcome by his leukemia (after 16 long months of a hard fought battle...). He joined his grandmother - my mom, Grace, in her new home in heaven. Words cannot express the emotions and feelings as I find myself still alive when such supporters as mom and Jake are no longer physically walking this earth with us. I do talk to them both frequently as they are now so close. To friends and family reading this: "Thanks for your many prayers and wishes of condolence."

Exercise

Remember those daily exercise walks of 3 miles each, twice a day, 7 days a week? As time is increasingly taken up again by the normal other activities of life - like returning to work - the reality has settled in to a once per day, 3 mile walk, which still feels great and meets all my self-imposed programs for rehabilitation and good health. My father-in-law, Charlie (79 years young!) often paces me on such walks, making them most enjoyable. Brother-in-laws, Joe and Chuck, fill in whenever they can to keep me going on the weekends up in NJ. In solitude, the music playing Walkman tape player - also used for listening to self-improvement programs - is my constant companion. There must be at least a few neighbors who wonder at the swagger of that morning walker - each day to the beat of a different type of music: African, Oldies, Richard Simmons, Celtic, Polkas, Broadway shows, etc. - all serve to keep the exercise time enjoyable and upbeat. The springtime weather has been very supportive and the discovery of being able to conduct such a walk after dark, especially under a full moon, has been a special delight. There really is always time for exercise, if that is a priority in one's 24 hour day - not easy, but possible. Its been fascinating to find that everyone accepts my walking around the neighborhoods for hours on end as long as it is in circles. As soon as I started establishing someplace to go to that was 3 or 4 miles (i.e., 1hr) in a straight line - wow, does that raise the eyes and concerns. "Should you be doing that?" "You just walked all the way from where?" Same distance, just in a straight line, with an objective - big difference - just as pleasurable to the patient - a return to values of yesteryear, before we drove by car to everyplace.

Do you also remember the racing heart problem as we welcomed in the new year? Well, as the doctors predicted when they repaced it from the much-too-fast 160bpm to a regular 84bpm, it has not gone back to that fast pace again. Why? Neither I nor they know why, it just doesn't - and that's good. Now the only time it races is when a pretty girl passes by - as any normal 20-yr old heart would, right? Sounds healthy to me! My energy level remains high - a marked improvement over the drained feeling before the miracle workers at HUP did their work.

Organ Donation

In light of this transplant experience, many of you have asked how they might be an organ donor - an interest I strongly support, obviously. It really is very easy. Some states (PA, for example) provide a place on their driver's licenses to indicate such wishes - but whether you use that, or just a card (of your own making, or available at any hospital - or I'll even send you one...) - the critical thing is to let your family know of your wishes. They get to make the decisions when you are no longer in a position to do it for yourself. So tell them - and carry an organ donor card next to your driver's license (that's where police and emergency staff look for your name, etc.) Believe me, those organs aren't going to do you or anyone else any good after death - unless you pass them on like my own 20 year old donor did. Did I tell you that? My 52 year old body has a 20 year old heart - what a thought! (Yes, and with an H-wave, no less - remember details in the earlier report?) - just in case you forgot - because I never will. Please, for the sake of Dave and John (friends awaiting a heart at HUP as of this writing), in memory of Mike (who died recently because a heart wasn't found in time), consider leaving a gift of your own organs to help others like myself and them live.

Information Available

If you didn't get either of the earlier two status reports (or any of the several smaller pieces written up for our family newsletter, The Gleason Gazette - see complete listing in the attachment to this report), please feel free to write/call and request them. I love sharing this whole experience, especially with anyone going through their own challenge - whether that be a heart transplant, open heart surgery, other life threatening illness, or whatever - just ask and you shall receive, as they say. It has been a most pleasant surprise to find that these writings are a source of education (to patients, family, nurses, etc.), uplifting good news in a world where so much news seems to be of a negative nature, and just encouragement to so many - anyway, it feels good to be alive and be able to share this gift with you. You will note in the list that several more topics will be coming in the near future. If you have a suggested topic, I'll entertain that request too. Also, in reply to many requests, yes, feel free to pass these writings on to anyone you think might benefit from its reading. If this keeps up, it may eventually appear on the Internet everyone's talking about, and even become a real book - but then you'd have to pay money for it - but at least my friends will get an autographed copy, huh?

Passing of Intelligence in Organ Transplants?

A very interesting question (trivia perhaps...) has arisen from my reading, mainly from the writings of Deepak Chopra, MD - ref: Ageless Body, Timeless Mind, but also Bill Moyers Healing and the Mind book (not to mention a recent documentary, The Secret of Dreams, on NBC TV). Seems science is beginning to realize that human intelligence is not limited to just the brain. Our emotions, memories, feelings, etc. permeate our whole body - contained in every cell of our body and affecting every other cell too. If that is accepted, then the question opens up as to whether the recipient of a donated organ (i.e., my heart - made up of many millions of cells from a donor body - filled with their own intelligence?) takes on some of the donor's intelligence - more specifically, their memories, inclinations, their ...? Now before you just dismiss this as being too far fetched, consider the following story as told in the Deepak Chopra book: (ref. p22) ...

"Perceptions of love, hate, delight, and nausea stimulate the body in extremely different directions. In short, our bodies are the physical results of all the interpretations we have been learning to make since we were born. Some transplant patients report an uncanny experience after receiving a donated kidney, liver, or heart. Without knowing who the organ donor was, they begin to participate in his memories. Association that belonged to another person start being released when that person's tissues are placed inside a stranger. In one instance, a woman woke up after a heart transplant craving beer and Chicken McNuggets; she was very surprised, because she had never before wanted either. After she began to have mysterious dreams in which a young man named Timmy came to her, she tracked down the donor of her new heart, which had come from the victim of a fatal traffic accident; when she contacted his family, it turned out that the victim was a young man named Timmy. The woman was stunned to discover that he'd had a particular fondness for drinking beer and had been killed on his way home from McDonalds."

To further support the idea, this week I received an article from the June,'95 issue of National Geographic (a reputable source), sent by my friend Dr. Ken Pass, a director in the NY State Department of Health's famed Wadsworth laboratories, entitled: Quiet Miracles of the Brain. Again in this article, the concept of our emotions being carried in our cells (known as neuropeptides) is supported (from that article: "Neuropeptides are in the heart too". My doctors point out that this is not the position of science today, but I reply, who really knows, but there have been some interesting cases which support such thoughts. Needless to say I am more than casually interested and am actively looking for other transplant patients to talk to about these ideas - even to the development of a survey which may eventually appear on the Internet. The problem is that the confidentiality bond prevents most recipients from ever knowing any details of the donor, so such research is almost impossible. Anyway, what do you think? Got any candidates for such a survey - or other stories to add - or references on this idea?. Contact me if you do - or better yet, have them contact me.

From Here...

So how does it feel, you ask? "Great!" So much better than the alternative. The quality of life, as it is so often referred to, has returned to life as it was before that virus attacked the heart muscle back in July of 1992 - and that is good. As of this moment in writing we are trying to discover why, during exercise, occasionally the head doesn't seem to be getting enough blood and unless I stop, fainting would result. While this was the norm back in the first months after transplant due to the lack of nerve endings between the new heart and the patient's body, that symptom disappeared even under heavy duty exercise, until about a month ago. Could it be a by-product of the added weight (up to 250lbs from a hospital release of 204lbs - note: a year ago the body weighed 271lbs)? We really don't know and a loop event monitor was used for the past week to capture the heart activity before and after each dizziness episode. That didn't show the cause - but then the episodes have ceased since the recent loss of 13lbs (due to disciplined nutrition and reduction in the steroid, Prednisone). Time will tell. Today it was a battery of blood tests/cultures and x-rays to find out why the body temperature has been climbing into the 100's for the past 3 days. Everyday trivia for the "normal" body becomes major concerns for the heart transplant patient, so we must be ever vigilant. But then the grass got mowed, pepper plants planted in the garden, and two cars were washed as part of the same day's activity, and that did feel so very normal and good. Oh, and did I mention getting out to play badminton with some girls in our neighborhood, Sarah and Katie, along with their father, Lou, in the yard the other night - no big deal for you, you say, but a real return to beautiful youthful days lost long ago to the ravages of a virus damaged heart - very special - "Thanks girls!"

In closing, I continue to pray that each of you are doing as well, if not even better, than I am - because as I said before: "Life is good!" and I hope you find it so too!!!

.... to be continued in a planned new publication to be entitled:

The Good News Gazette...

"Thanks" - with love and gratitude -