Part 4: Approaching the New Century with a New Heart

Written from home - February 14th, 1995

My dear friend:

"Did you see it this morning? At 6:45am, while doing the first of two daily 3 miles exercise walks, there, high above the bright peach colored Philadelphia sunrise horizon, a white crescent moon with the brightest of stars just above it (Venus, at the closest point it will be for the next 30 years...), against a cloudless blue sky! It was so beautiful - I thought of you - and all the prayers and support you have been giving me over these months. I just had to share the moment and say again: "Thanks!" Valentine's Day has such special meaning this year, so share that with me also, as I wish you a Happy Valentine's Day!"

Well, I promised you a regular status report - here's the next one, i.e., number 2 of two. I can't tell you how great it is to have this new life. My day starts with realization that this is yet another miracle - this day is yet another gift, and I offer my morning prayer of thanks, for that gift, and that gift of you!

And everybody keeps asking:

"So how's it going, Jim?"

"How's the new heart doing after the 1st three months?"

"Are you bored with sitting around?"

"When are you going/coming back to work?"

First, let me say how good it is that people like yourselves are still thinking to ask those questions. Your concern, love, support and prayers have really been an inspiration and the best medication any patient can ask for. The doctor's medications all have many strange negative side effects - yours only have good side effects - "Thanks!" - and keep it up please, for as you will see by the following update to my original status report, your prayers are still needed, despite the fact that things continue to go exceedingly well.

Let's see, where did we leave off on that original report - I think it was sharing how good life could be with a "typical day" that was blowing my daily scoring system right off the top of the scale - i.e., Hitting a 30, with an H-wave no less - do you remember? Well, while that 30 is still a lifetime high (on that scale that only goes up to a 10...), a lot of beautiful things have continued to happen keeping things very much on the up side and I'll try to share as many of them here as I can recall and still keep this reasonably short for your readability, OK?

Needless to say, our family had a beautiful Thanksgiving holiday with so many miracles to be thankful for, with many tears shed as we prayed over His blessing of the lifesaving transplant of October 19th (Wow, can it be only 3 months ago?). Each succeeding day is welcomed for the ongoing miracle it is. My strength increased with each passing day and by the 1 month mark I was walking a couple of outdoor miles each day and passed the stress test required to enter the local Phoenixville hospital's Cardiac Re-hab program for the three months that would end early March. Today I go there 3 times a week to use a treadmill (3 miles) or exercise bike (10 mile workout) while they monitor the impact of such work on that heart - and all tests out well to date. The other days I work out at home often doing a total of 6 miles of outdoor brisk walking (in two 3-mile parts) - and it sure does feel great for me, a non-exercise person, to be doing that. Our winter has been so very mild there just has been no excuse to not get out there and "do it" every day. The walk is also time to listen to books on tape and exchange correspondence tapes with family and friends - as well as enjoy some beautiful sunrises here over Philadelphia early in the morning (don't worry, I'm bundled up well from the cold and the doctors have OK'd the routine with enthusiasm...).

By Christmas word was received from Susan, our daughter living in Chicago, that we are to become grandparents by July! Wow, our first time! - and me with a new heart to enjoy the event. Needless to say, when Sue & Chris visited for Christmas, our celebration just got better and better ("Life is so good!"). Keeping away from family crowds and especially children (they carry so many germs that I have to keep away from with this immune suppressed system of mine...) was very tough at this time of year, but we survived with reasonable contact under watchful doctor's eyes (and bi-weekly biopsies of the heart). On top of that our recently graduated (from Drexel University with an engineering degree - and a job!) son, Michael, announced his engagement to Kim, his sweetheart since high school with a planned wedding in spring of 1997 ("Life is so very good!"). Then came New Year's Day and with it a new life experience - something I have learned from the CD ROM Christmas gift of The TOTAL HEART - a neat program for the PC from daughter Mary and her boyfriend, Brian - is called atrial flutter.

Well, here it was, 1995 - Happy New Year! We find this heart rate of mine beating at 150bpm! No other symptoms of any kind - just knew I couldn't count the pulse because it was going so fast when I checked it about midnight Sunday night after a fairly quiet New Year's Day. Monday I went for my usual 3 mile exercise walk - no problem. Spent the day seeing Chris & Susan off at the airport - then on to Phoenixville hospital for the scheduled cardiac physical rehab workout where the 150bpm showed up on the monitor even before I started to exercise - much to the concern of nurse Sue and her assistant, Cecelia. Quickly they called the director of the program (just happens to be my cardiologist, Dr. Magness - the greatest!) - who in turn had them call the physician on call - my family doctor (Dr. Real - a "real" doctor and another great friend! - were these good omens, or what?) - who came right in and verified what we all could see on the monitor. He took me one floor down to the emergency room to administer some drugs under special monitoring to see if they would break the fast rhythm back to the normal sinus rhythm of approx 80bpm. This new heart just wouldn't quit and insisted on staying at 150 so an overnight stay was ordered to monitor some of the longer acting drugs (I stayed up reading the huge drug reference book on all these meds - wow, don't ever do that - it's knowing too much that can get scary) - and by the next morning that heart was still going at 150bpm (by way of reference - my daily pulse count is usually 84, walking up hills will get it up to 120, on the stress test they had stopped me at 128, during rehab exercise its 115 at the top end...). It was decided I should return to Univ of PA hospital where they would do a heart cauterization to repace the heart back to the sinus rhythm. An ambulance was called and by noon I was back in the same cardiac care unit as back in October - amid friendly nurses and doctors I knew only too well - they were wonderful - like coming home.

Wednesday they did the regularly scheduled biopsy cath procedure and then the EPS (Electrical Physiology Study) team took over using the same cath tube into the heart to do a study I had agreed to - seems this flutter is not uncommon in heart transplant patients but they still don't understand why. PS: results back from that biopsy showed again No Rejection! (6th time) Anyway, after a fascinating 2-1/2 hrs of watching them play around inside my own heart (on the monitors overhead - you are wide awake the whole time and able to converse with the 10 doctors doing the study) they then performed the process of sending their own signal at a rate faster then the atrial flutter signal, then by slowing it down they "capture" (i.e., like the cowboy hero heading off the runaway stage coach team of horses) the errant signal and pace it down below that of the sinus rhythm (your normal pacing signal that in this case was being over-ridden by this atrial fast signal) - time to accomplish: approx 10 seconds while you watch the BPM come down on the monitor and you can see the EKG graphs illustrate the rate change on the other monitors along side (taken by some 12 electrical leads attached to your chest and legs). Neat! No pain - no anxiety - pleasant conversation - lots of education - even allowed me to bring in my own music to be played in the operating suite - I had Les Miserables with me which everybody enjoyed...). Then it was back to the room for 4 hours of healing rest for the groin entry point where they had entered the catheter into a vein that is followed up into the heart - that's the hard part, after lying on your back for 4 hours of the procedure, then to have to lay still for yet another 4 hours - you get very stiff and ansi (not to mention having to go to the bathroom). After an overnight stay to insure permanence of the new rhythm, I returned home Thursday morning and the rate continues at about 75 to 85 bpm - feeling fine - but then I felt fine before too, right? They still don't know the why of it - but assure me that it seldom recurs (even though no fix has been applied, just eliminated the symptom). Time will tell, right? Anyway that's the story of the beginning of our new year.

The critical treatment right now is that very delicate balance of 44 pills per day - including several very dangerous steroids that serve to suppress the body's immune system - thus preventing the body from rejecting the new heart (a life time task since the heart never becomes native to your body...). But, with the immune system surpressed, the body is open without guard to any and all infections that the normal person just takes for granted - hence the avoidance of contact with crowds (i.e., parties and going back to work), kids, animals, molds, etc. With each passing bi-weekly biopsy without signs of rejection, those steroids get reduced to see if they can still balance between rejection and infection. This past week, at exactly the 3-month milestone, rejection was found! The body's white cells were able to become too active after the most recent steroid reduction and started to attack the "foreign" heart. Somehow I can picture the red cells saying: "Hey! That's not our heart - you white cells, go get it!" "Attack! Protect!!" Meanwhile I'm up here looking in telling them all: "Hey guys, that's a friend - keeping us all alive! Make peace, not war!"

Things happened fast. The transplant team had educated us well and we knew to expect such rejection - its a normal part of the process, but still not wanted, of course. Also, good fortune continued in that just a week ago, as part of the Cardiac Rehab program mentioned earlier, a meeting had been arranged, one on one, with a pharmacist, Mike Delucia, who comes from a special background. Turns out he worked in the early 80's with the transplant teams doing pioneer research in the heart transplant field with these (then new) steroids. Needless to say the time we had together was well spent - he had the knowledge and conveyed it well to this eager student. When news of the rejection came, this education prevented any anxious moments from hindering the healing process. ("Thanks, Mike!") You treat rejection before the patient even knows of any symptoms by increasing the at-home infusion of an increased steroid dosage - 50 times greater than the normal daily dosage! - but only for 3 days - at home, not back in the hospital - "piece of cake!" Within 20 minutes of being notified of the rejection, the home care pharmacy was scheduling delivery of an IV pole and 3 bags of medicine and associated needles - with a visiting nurse calling even before we had heard from the hospital to schedule her training visit for the next morning! Saturday morning and the IV was begun with the patient completing the next 2 days with self-administering of the dosage. Boy, will I be a concern of the nurses if I ever have occasion to return to the hospital again - a little knowledge is a dangerous thing, they say. And they thought I was bad before! February 2nd is the next biopsy and then we will see how this has worked out. All I can tell you is that I continue to feel great - but then the transplant team always said they would know I was in trouble long before I would ever know of it. So far I'm very impressed with this part of the experience too. No anxiety at all on my part - complete confidence in the support team - and a wife, family, and friends that just keep standing by in full support and concern. They are the ones who have carried the burden of worry, thus freeing me from any of that.

The steroids have been a very different impact on life as I know it. Many side effects are possible with them - from diabetes to gout, heavy weight gain, oily skin, mood swings, short attention spans, trembling hands, heavy hair growth (wait til you see my big dark eye brows!) - just to name a few - and not mentioning the possible long term ones that are even worse. While my own reactions have been fairly mild and few, they do include the weight gain and mood swings. Mood swings in this case mean something different than what I had expected. Flying off the handle and being upset by things that I would normally have been very patient with in the past is typical. A feeling that everyone else is trying to run my life has turned out to be a form of paranoia associated with the medications - one that had diminished as they have lowered the dosage and allowing me to "see" that it is me at the root of the feeling, not the actual events around me or "others" doing it to me. My patient wife even was driven to call the hospital transplant team and ask: "Who is this monster you sent home to us?" (This is funny in retrospect, but it sure wasn't to her at the time...) They explained that its just like a woman going through PMS and to hang in there as it should get better in 3 months or so. Her patience (and that of the whole family) has been truly tested - but she passed, even when I didn't. Hopefully that is fast becoming a thing of the past as the steroids are lowered and our understanding increases. The weight gain is an ongoing struggle, driven by the hunger generated by those steroids. Everything that fats and cholesterol can do to the "normal" person is magnified by the steroids in the transplanted patient so the danger of clogged arteries, etc. is much greater and thus my diet is low-everything! - and you know my love of eating everything!

As far as that attention span thing, all I can tell you is that boredom is not a problem. Life is like a huge smorgasbord and my plate of time in any day is just too small to hold it all. I currently find myself actively reading 12 books every day - at least a chapter of each! Projects are begun and seem to lead into others before the first is ever finished - leaving a trail of open activities and the frustrations associated with trying to do many things at once (but then people tell me that I always did that - maybe its just the mind trick thing again in dealing with what used to be OK for me but now is reacted to differently - I don't really know yet). Putting out a follow-on edition of our family newsletter (the December issue ran 64 pages!), converting old 1940 family movies onto video, completing a family genealogy database with over 400 names in it so far, writing articles for the hospital's support group newsletter, building personal goals and career plans that go out even beyond the year 2000, searching for the why and how of this 2nd life with a new heart, even learning new skills with thePC - are just a few examples of selections I have put on to that plate from life's "buffet" table in recent months. This is in addition to keeping up with correspondence and helping strangers facing the uncertainties of heart transplants via phone calls from friends around the country. There just are not enough hours in the day - and I am enjoying every minute of it - but realizing that this "sabbatical" from daily work at Unisys is moving fast to an end as I anticipate returning to my old job (whatever that may have evolved into in our fast changing times in the corporate Unisys world) by mid-March. The on-going support of the Unisys family has been most encouraging in that regard.

Thanks to an excellent short term disability program at Unisys, and a full coverage health insurance, finances have not become a problem despite a constant flow of hospital , doctor and medicine bills that are fast approaching the half-million dollar mark!! The monthly tests and medicines (where one steroid pill is $47 according to the hospital bill and you take 6 of these every day!) would run about $5,000 per month for the first year at least - a real problem if your insurance isn't covering most of it. Ours is! Living close by the University of PA hospital (downtownPhiladelphia - about 45 minutes away with good traffic...) has been a real blessing causing only the inconvenience of commuting vs. a major relocation for some of the families we have come to know going through the same experience. We have been very blessed. Like I said before:

"Life is very, very good!"

Each week a pair of friends from Unisys have come out to join me for a special treat of lunch with the old gang - what fun that has been, and we very seldom touch on business subjects (which has often come as a surprise to them - not to me). A select group of carolers from the EUCS office came by to add their special Christmas touch to this home-bound body - led by Jim Dougherty even dressed as Sana Claus with bells on!

Kathy Ryan, our secretary - no, make that our hostess and cheer leader for the campaign to keep Jim on our minds - has done a magnificient job with a constant flow of cards and good wishes, and keeping the information flow back to the Unisys family current and supportive.

The get well cards have come from Australia, Hawaii - from all over the country, and some in very special customized formats designed by very talented people in our work support group of End User Computing Services - what a good feeling for this patient during the recovery process! Thank you everyone. There is just no way to express my sincere thanks, especially for the prayers - in so many religions and from all over the country - you just wouldn't believe - take my word for it - its terrific and so morale boosting during times that could have been so hard otherwise.

For now I continue to take special pleasure in enjoying my music (lots of beautiful CD music that even can be played in the background on the PC as I write this...) and work at everything they tell me to do to help with the healing process - and it does continue to go very well - despite atrial flutters, rejections, mood swings, etc. It truly has been a miracle and I offer prayers of thanksgiving every day for all the love and support that have come with this miracle of a new life. Very simply I say again to all of you:

"Thanks, from the very bottom of my new heart!"

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